Article of the month
The Interdem website committee selects an Interdem ‘ Publication of the month’. This is a recent scientific paper, written by Interdem members that will be put in the spotlights because of its innovative character, methodological soundness, impact, or discussion of relevant psychosocial interventions in dementia.
Pubmed will be searched for potential publications of the month and Interdem members may also send relevant new publications to the website committee (a.barbosa@bradford.ac.uk).
Website committee members cannot vote for an article they co-authored.
2025
For publication of the month February, the website committee selected the following publication:
Gonçalves-Pereira M, Marques MJ, Alves RF, Jelley H, Wolfs C, Meyer G, Bieber A, Irving K, Hopper L, Zanetti O, Portolani DM, Selbaek G, Røsvik J, Sköldunger A, Sjölund BM, de Vugt M, Verhey F, Woods B. (2025) Sense of coherence, subjective burden, and anxiety and depression symptoms in caregivers of people with dementia: Causal dynamics unveiled by a longitudinal cohort study in Europe. J Affect Disord. 15;373:1-11. doi: 10.1016/j.jad.2024.12.078.
In this article a large cohort of 451 dyads of community-dwelling people with mild-moderate dementia and their caregivers was followed for one year. Causal relations were studied between sense of coherence, burden, depression and anxiety of caregivers. Sense of coherence levels remained stable after twelve months, while caregiver burden and anxiety and depression symptoms increased. Findings were consistent with sense of coherence potential protective role against burden and psychological morbidity. However, they also supported reverse causality regarding part of the associations. Caregivers’ sense of coherence levels may be directly influenced by subjective burden and psychological morbidity.
For publication of the month January, the website committee selected the following publication:
Dröes RM, McDermott O, Dassen FCM, Verhey FRJ, Orrell M. (2025). Best practice guidance to improve the design, effectiveness and implementation of technology for people with dementia. Aging Mental Health; 29(1):1-3. doi: 10.1080/13607863.2024.2379422.
This paper focuses on the web-based Best Practice Guidance for Human Interaction with Technology in Dementia, which provides recommendations on how to improve, evaluate and implement needs-based technology that is usable and effective for people with dementia, their caregivers, and care and welfare services providing care and support. The Best Practice Guidance is based on the research conducted in the Marie Sklodowska Curie Innovative Training Networks INDUCT and DISTINCT . It is a dynamic document that has been updated yearly since it was launched in 2019 and aims to be updated when new insights are available in this continuously growing field.
2024
For publication of the month December, the website committee selected the following publication:
Giebel C, Marshall H, Cannon J, et al. The impact of game play on dementia knowledge: A student evaluation of the Dementia Inequalities Game. Dementia. 2024;0(0). doi:10.1177/14713012241306489
The aim of this study was to assess the impact of playing the co-produced Dementia Inequalities Game on knowledge about dementia and associated inequalities in health care, allied health professional, nursing and psychology students. The game was played by 318 undergraduate and postgraduate students in North of England. Playing the game significantly increased knowledge about dementia (p < .001) and dementia inequalities (p < .001). The Dementia Inequalities Game is an effective tool to improve knowledge about dementia and associated inequalities in health care and psychology students. Using the game as an educational and sociable intervention in health and social care professionals is a next avenue to test.
For publication of the month November, the website committee selected the following publication:
For publication of the month October, the website committee selected the following publication:
Kohl, G., Koh, W. Q., Scior, K., & Charlesworth, G. (2024). “It’s just getting the word out there”: Self-disclosure by people with young-onset dementia. PLOS ONE, 19(9), e0310983. doi: 10.1371/journal.pone.0310983
For publication of the month September, the website committee selected the following publication:
For publication of the month August, the website committee selected the following publication:
See full text.
Objectives
Family caregivers of persons with dementia (PwD) experience high levels of distress. We used a randomized-controlled trial to investigate the effects of telephone-based acceptance and commitment therapy (tbACT) for family caregivers.
Methods
Caregivers were randomly allocated to an intervention group (tbACT, n = 41) or an untreated control group (CG, n = 40). The intervention consisted of eight weekly sessions of tbACT. Depression and anxiety (primary outcomes), physical symptoms, pre-death grief, care-related thoughts, acceptance (secondary outcomes), quality of life, coping and well-being (well-being/coping outcomes) were assessed pre- and post-assessment. A 6-month follow-up was conducted.
Results
Compared to CG participants, tbACT participants had at post-assessment significantly lower depressive symptoms; fewer physical symptoms (rheumatic pain); better physical health; more resource utilization (coping with daily hassles, social support); better coping with the care situation and better emotional well-being. During the six-month follow-up, tbACT participants showed less pre-death grief, fewer physical symptoms, and more utilization of resources related to coping with daily hassles.
Conclusions
tbACT is a feasible and promising psychotherapeutic intervention for family caregivers of PwD. Because of small sample size our results are preliminary.
For the publication of the month July, the website committee selected the following publication:
See full text.
Background
Interventions promoting social activity may reduce behavioural psychological symptoms and improve quality of life in people living with dementia. This study aimed to identify social benefits for participants living with dementia in the context of Promoting Activity, Independence and Stability in Early Dementia (PrAISED), an exercise intervention programme promoting physical activity and independence in participants living with dementia in England.
Methods
This was a multi-method realist evaluation undertaking secondary analysis of data collected during the PrAISED process evaluation, including qualitative interviews with participants with dementia, caregivers and therapists, personal notes of researchers, and video recordings of therapy sessions. The study consisted of four phases: (1) Setting operational definition of social outcomes in PrAISED; (2) Developing Context, Mechanisms, Outcome (CMO) configurations; (3) Testing and refining CMOs; and (4) Synthesising definitive CMOs into a middle range theory.
Results
Two CMOs were identified. (1) When therapists were able to make therapy sessions engaging and had the caregivers’ support, the participants experienced therapy sessions as an opportunity to achieve goals in areas they were interested in. They also found the sessions enjoyable. This all led to the participants being highly engaged in their social interactions with the therapists. (2) When the participants realised that they were gaining benefits and progress through the PrAISED intervention, such as increased balance, this boosted their confidence in physical ability. It might also reduce caregivers’ risk-aversion/gatekeeping attitude, which in turn would lead to participants’ increased participation in social activities.
Conclusion
The PrAISED intervention supported social participation in participants living with dementia. Under certain circumstances, home-based therapy interventions can be beneficial for social health (regardless of physical health gains). Given the limitations of currently available outcome measures to assess social participation, qualitative methods should be used to explore social health outcomes.
For the publication of the month June, the website committee selected the following publication:
See full text.
Background:
People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time.
Methods:
The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer’s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time.
Results:
The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson’s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year).
Conclusions:
Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson’s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.
For the publication of the month May, the website committee selected the following publication:
Giebel, C., Harding, E., Volkmer, A., Chirico, I., Hopper, L., Szczesniak, D., et al. (2024). The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce. International Journal of Geriatric Psychiatry, 39(5), e6096.
See full text here
For the publication of the month April, the website committee selected the following publication:
Kristensen, F., Gregersen, R., Pedersen, M. K., Skrubbeltrang, C., & Thuesen, J. (2024). Rehabilitation Needs in People living with Dementia: A Scoping Review of Assessment Tools and Procedures. Aging and Health Research, 100187.
See here
Rehabilitation is increasingly being integrated into dementia care. To provide person-centred rehabilitation interventions, a systematic assessment of rehabilitation needs is essential. This scoping review was conducted to identify and map the characteristics of tools and procedures used by health professionals to assess the rehabilitation needs of people living at home with early-stage dementia. A comprehensive literature search was conducted in 2018, 2020, 2021 and 2023 of PubMed, Embase, PsycInfo, CINAHL and Prospero. Identified tools were classified according to the World Health Organization’s ICF classification and subjective perspectives. Procedures were classified according to place, time and the people involved in the needs assessment. Eleven papers were included. The population considered was predominantly people diagnosed with Alzheimer’s dementia. The identified tools mainly assessed problems with functioning, predominantly focusing on activity and less frequently on participation. One tool had a focus on the environment. None of the tools focused on personal factors. Subjective perspectives were mainly assessed in terms of goal setting. Procedures were poorly described. While several needs assessment tools were identified, procedures for needs assessment were sparsely described in the included papers. This scoping review indicates that a strengthened focus on needs assessment is needed in future research and practice.
For the publication of the month March, the website committee selected the following publication:
Christie HL, Atefi G, Craven MP, Orrell M, de Vugt ME. EmpRess: an eHealth implementation readiness checklist for dementia developed through an interview study of stakeholder needs. Aging Ment Health. 2024 Mar 11:1-9. doi: 10.1080/13607863.2024.2323951.
See here
This study aimed to create a tool to assess eHealth interventions for dementia by adapting an existing implementation readiness (ImpRess) checklist that assessed manualised interventions.
In Part 1, online semi-structured interviews with individual stakeholders (N = 9) with expertise in eHealth and dementia were conducted (response rate 83%). The Nonadoption, Abandonment, and challenges to the Scale-Up, Spread, and Sustainability of Health and care technologies (NASSS) framework was applied, both to guide the construction of the interview guide, as well as to use its subdomains as codes in the deductive qualitative thematic analysis. Respondents were industry professionals (n = 3), researchers (n = 3), policy officers (n = 2), and a clinician (n = 1). In Part 2, the items of the original ImpRess checklist were supplemented by items that covered determinants discussed in the interviews, that were not included in the original checklist.
The main findings from the interviews included: Participants’ preference for a non-dementia-specific, more general approach to the checklist; the importance of searching for shared values with implementers; and the need for more systematic monitoring of implementation.
The EmpRess checklist applies an inclusive design approach. The checklist will help evaluate the implementation determinants of eHealth interventions for dementia and provide up-to-date information on what is, and is not, working in eHealth for dementia care.
For the publication of the month February, the website committee selected the following publication:
Cooper, C., Vickerstaff, V., Barber, J., Phillips, R., Ogden, M., Walters, K., . . . Budgett, J. (2024). A psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: a single-masked, phase 3, superiority, randomised controlled trial. Lancet Healthy Longev, 5(2), e141-e151.
See here
Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers.
The authors did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138.
Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events.
NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services.
For the publication of the month January, the website committee selected the following publication:
Nimmons D, Aker N, Burnand A, Jordan KP, Cooper C, Davies N, Manthorpe J, Chew-Graham CA, Kingstone T, Petersen I, Walters K. Clinical effectiveness of pharmacological and non-pharmacological treatments for the management of anxiety in community dwelling people living with dementia: A systematic review and meta-analysis. Neurosci Biobehav Rev. 2024 Feb;157:105507. doi: 10.1016/j.neubiorev.2023.105507. Epub 2023 Dec 13. PMID: 38097097.
People living with dementia commonly experience anxiety, which is often challenging to manage. We investigated the effectiveness of treatments for the management of anxiety in this population. We conducted a systematic review and meta-analysis of randomised controlled trials, and searched EMBASE, CINAHL, MEDLINE and PsycInfo. We estimated standardised mean differences at follow-up between treatments relative to control groups and pooled these across studies using random-effects models where feasible. Thirty-one studies were identified. Meta-analysis demonstrated non-pharmacological interventions were effective in reducing anxiety in people living with dementia, compared to care as usual or active controls. Specifically, music therapy (SMD-1.92(CI:-2.58,-1.25)), muscular approaches (SMD-0.65(CI:-1.02,-0.28)) and stimulating cognitive and physical activities (SMD-0.31(CI:-0.53,-0.09)). Pharmacological interventions with evidence of potential effectiveness included Ginkgo biloba, probiotics, olanzapine, loxapine and citalopram compared to placebo, olanzapine compared to bromazepam and buspirone and risperidone compared to haloperidol. Meta-analyses were not performed for pharmacological interventions due to studies’ heterogeneity. This has practice implications when promoting the use of more non-pharmacological interventions to help reduce anxiety among people living with dementia.
2023
For the publication of the month December, the website committee selected the following publication:
See here
For the publication of the month November, the website committee selected the following publication:
Taranrød, L. B., Kirkevold, Ø., Pedersen, I., & Eriksen, S. (2023). The transition of care from farm-based daycare for people with dementia: The perspective of next of kin. International journal of qualitative studies on health and well-being, 18(1), 2228047.
See https://pubmed.ncbi.nlm.nih.gov/38016039/
Purpose: The aim of the present study was to explore the next of kin’s experiences with the transition for people with dementia from a farm-based daycare (FDC) to another service in the municipality.
Methods: The study has a qualitative, descriptive design. Eight semi-structured interviews with next of kin were conducted. The data were analysed in accordance with content analysis.
Results: Through the analysis three main categories were developed: (1) Bearing the burden, (2) Being in transition, and (3) Feeling supported. The transition period was highly stressful for next of kin due to the exacerbation of their relatives’ dementia symptoms. The next of kin focussed on optimizing the everyday lives of their relatives with dementia, even at the expense of their own well-being. Most participants experienced support from FDC, healthcare services and their informal network.
Conclusions: The study contributes important insights into the next of kin’s experiences. Good quality service, close dialog, information, and support between the different part in the transition process, can be useful for the further development of services with good quality and to reduce the negative effects of care on next of kin.
For the publication of the month October, the website committee selected the following publication:
(2023) Self-Disclosure and Social Media Use among Younger and Older People with Dementia: An Internet-Mediated Mixed-Methods Study, International Journal of Human–Computer Interaction, DOI: 10.1080/10447318.2023.2265728
This mixed-methods study explores self-disclosure by people with dementia on social media, comparing patterns and purpose of use by those aged 65 and above versus those aged under 65. Of 143 internet-using respondents of an online survey, 77 (aged between 44 and 88 years) were users of social media. Facebook was the most commonly used platform (95%), followed by Twitter, Instagram, LinkedIn, YouTube, and TikTok. People with dementia aged under 65 used more platforms and used social media more frequently than older counterparts. Results show that younger users shared dementia-related information for purposes of advocacy and awareness whereas older users prioritized the dementia journey. Social media gives people with dementia a voice to share their experiences, raise awareness, and support themselves and other individuals affected by the condition.
For the publication of the month September, the website committee selected the following publication:
Harwood, R. H., Goldberg, S. E., Brand, A., van Der Wardt, V., Booth, V., Di Lorito, C., Hoare, Z., Hancox, J., Bajwa, R., Burgon, C., Howe, L., Cowley, A., Bramley, T., Long, A., Lock, J., Tucker, R., Adams, E. J., O’Brien, R., Kearney, F., Kowalewska, K., … Masud, T. (2023). Promoting Activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED): randomised controlled trial. BMJ (Clinical research ed.), 382, e074787. https://doi.org/10.1136/bmj-2023-074787
For the publication of the month August, the website committee selected the following publication:
Huizenga J, Scheffelaar A, Bleijenberg N, Wilken JP, Keady J, Van Regenmortel T. (2023). What matters most: Exploring the everyday lives of people with dementia. International Journal of Geriatric Psychiatry, 38(8), e5983.
Available here
For the publication of the month July, the website committee selected the following publication:
Salcher-Konrad M, Shi C, Patel D, McDaid D, Astudillo-García CI, Bobrow K, Choy J, Comas-Herrera A, Fry A, Knapp M, Leung DKY, Lopez-Ortega M, Lorenz-Dant K, Musyimi C, Ndetei D, Nguyen TA, Oliveira D, Putra A, Vara A, Wong G, Naci H (2023) STRiDE Evidence Review Group. Research evaluating the effectiveness of dementia interventions in low- and middle-income countries: A systematic mapping of 340 randomised controlled trials. Int J Geriatr Psychiatry, 38(7):e5965
More people with dementia live in low- and middle-income countries (LMICs) than in high-income countries, but best-practice care recommendations are often based on studies from high-income countries. The authors aimed to map the available evidence on dementia interventions in LMICs (registered on PROSPERO: CRD42018106206). Randomised controlled trials (RCTs) published between 2008 and 2018 were included. A total of 11 electronic academic and grey literature databases (MEDLINE, EMBASE, PsycINFO, CINAHL Plus, Global Health, World Health Organization Global Index Medicus, Virtual Health Library, Cochrane CENTRAL, Social Care Online, BASE, MODEM Toolkit) were searched.
A total of 340 RCTs with 29,882 (median, 68) participants, published 2008-2018 were included. Over two-thirds of the studies were conducted in China (n = 237, 69.7%). Ten LMICs accounted for 95.9% of included RCTs. The largest category of interventions was Traditional Chinese Medicine (n = 149, 43.8%), followed by Western medicine pharmaceuticals (n = 109, 32.1%), supplements (n = 43, 12.6%), and structured therapeutic psychosocial interventions (n = 37, 10.9%). Overall risk of bias was judged to be high for 201 RCTs (59.1%), moderate for 136 (40.0%), and low for 3 (0.9%).
Evidence-generation on interventions for people with dementia or MCI and/or their carers in LMICs is concentrated in just a few countries, with no RCTs reported in the vast majority of LMICs. The body of evidence is skewed towards selected interventions and overall subject to high risk of bias. There is a need for a more coordinated approach to robust evidence-generation for LMICs.
Available here
For the publication of the month June, the website committee selected the following publication:
Ziebuhr B, Zanasi M, Bueno Aguado Y, Losada Durán R, Dening T, Tournier I, Niedderer K, Diaz A, Druschke D, Almeida R, Holthoff-Detto V (2023). Living Well with Dementia: Feeling Empowered through Interaction with Their Social Environment. International Journal of Environmental Research and Public Health, 20(12):6080.
This study aims to understand how feelings of empowerment in people living with dementia still residing at home can be promoted. The authors conducted interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part of a European study on mindful design for dementia. Three categories were identified: the first category ‘experiencing changes in personal life and coping with changes in life’ covered losses and coping strategies; the second category ‘retaining a sense of usefulness‘ included social participation and the need for activities with others; the third category ‘feeling empowered’ covered reflections on lifetime achievements, accomplishments in the present life, being in control and self-worth. Participants emphasised continuity and the importance of making active decisions and meaningful social contributions. Empowerment within the person living with dementia was achieved through their interactions with their social environment, including the significance of communication about their needs and wishes and enabling shared decision-making and interactions with others in reciprocity.
Available here
For the publication of the month May, the website committee selected the following publication:
Dörner, J., Hüsken, J. M., Schmüdderich, K., Dinand, C., Dichter, M. N., & Halek, M. (2023). Perspectives on sleep of people living with dementia in nursing homes: a qualitative interview study. BMC Geriatrics, 23(1), 331.
BACKGROUND: Disturbed sleep among people living with dementia in nursing homes is widespread and is associated with diseases and all-cause mortality. This study examined the sleep of people living with dementia from their perspectives in nursing homes and that of the nurses who care for people living with dementia. METHODS: A qualitative cross-sectional study was conducted. A total of 15 people living with dementia and 15 nurses in 11 German nursing homes were enrolled in this study. Data was collected between February and August 2021 through semistructured interviews, which were audio recorded and transcribed. Thematic analyses were performed by three independent researchers. Thematic mind maps and controversial findings were discussed with the Research Working Group of People with Dementia of the German Alzheimer Association. RESULTS: Thematic analysis identified five overarching themes from the nursing home participants regarding sleep patterns: (1) characteristics of good sleep, (2) characteristics of bad sleep, (3) personal influences of people living with dementia on sleep, (4) environmental factors on sleep, and (5) sleep strategies of people living with dementia. Analysis also identified five overarching themes from the nurses participants: (1) characteristics of good sleep, (2) characteristics of bad sleep, (3) personal influences on sleep, (4) environmental factors on sleep, and (5) interventions for sleep promotion. CONCLUSIONS: The thematic analyses demonstrated that the perspectives of people living with dementia and nurses indicate the need to give more consideration to psychosocial factors and individual aspects of sleep in clinical practice. The results could also be helpful for the development of targeted assessment instruments and complex non-pharmacological interventions to promote sleep.
Available here
For the publication of the month April, the website committee selected the following publication:
Scheeres-Feitsma, TM, van Laarhoven, AJJMK, de Vries, R, Schaafsma, P, van der Steen, JT. Family involvement in euthanasia or Physician Assisted Suicide and dementia: A systematic review. Alzheimer’s Dement. 2023; 1- 13. https://doi.org/10.1002/alz.13094
This is an innovative and relevant subject. The paper describes the results of a systematic review about the involvement of family in euthanasia or physician assisted suicide (PAS) in dementia. The authors concluded that the wish for euthanasia/PAS arises in situations of burdensome care and fear of future deterioration. The family feels entrusted with the responsibility to enact upon the death wish. In shaping this responsibility, four roles of family can be distinguished: carer, advocate, supporter, and performer. Family as in need of support themselves is understudied.
Available here
For the publication of the month March, the website committee selected the following publication:
James, T., Mukadam, N., Sommerlad, A., Barrera-Caballero, S., & Livingston, G. (2023). Equity in care and support provision for people affected by dementia: experiences of people from UK South Asian and White British backgrounds. International Psychogeriatrics, 1-10
This study aimed to explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable. Results showed that people of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere.
Available here
For the publication of the month February, the website committee selected the following publication:
Thijssen M, Kuijer-Siebelink W, Lexis MAS, Nijhuis-van der Sanden MWG, Daniels R, Graff M. What matters in development and sustainment of community dementia friendly initiatives and why? A realist multiple case study. BMC Public Health.
The aim of this study was to identify contextual factors and mechanisms that influence the development and sustainment of Dutch Dementia Friendly Initiatives, and explain how they are interrelated. To this end, a multiple case study was carried out using a realist approach. Interviews, observations, documentation and focus groups were used with professionals (n = 46), volunteers (n = 20), people with dementia (n = 1) and carers (n = 2). Findings revealed that the development and sustainment of dementia friendly initiatives require the development of a support base, collaboration, and participation of people with dementia and their carers.
Available here
For the publication of the month January, the website committee selected the following publication:
Sabatini S, Martyr A, Gamble LD, Collins R, Matthews FE, Morris RG, Rusted JM, Pentecost C, Quinn C, Clare L; behalf of the IDEAL study team. (2023) Longitudinal Predictors of Informant-Rated Involvement of People with Dementia in Everyday Decision-Making: Findings from the IDEAL Program. J Appl Gerontol.
This study explored informant-rated involvement of people with dementia in everyday decision-making over 2 years and whether functional, behavioural, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making. IDEAL data for 1182 people with dementia and their caregivers ws used. People with dementia who were female, single, and/or whose caregiver was younger had greater involvement in everyday decision-making than those without these characteristics. Better cognition, fewer functional difficulties, fewer neuropsychiatric symptoms, less caregiver stress, and better informant-rated relationship quality were associated with higher involvement in everyday decision-making. Cognitive and functional rehabilitation, and educational resources for caregivers, could prolong involvement of people with dementia in everyday decision-making.
Available here
2022
For the publication of the month December, the website committee selected the following publication:
Ashley, L., Surr, C., Kelley, R., Price, M., Griffiths, A. W., Fowler, N. R., . . . Wyld, L. (2022). Cancer care for people with dementia: Literature overview and recommendations for practice and research. CA Cancer J Clin, Advance access.
As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families.
Available here
For the publication of the month November, the website committee selected the following publication:
Marques MJ, Tan EYL, Woods B, Jelley H, Kerpershoek L, Hopper L, Irving K, Bieber A, Stephan A, Sköldunger A, Sjölund BM, Selbaek G, Røsvik J, Zanetti O, Portolani DM, Marôco J, de Vugt M, Verhey F, Gonçalves-Pereira M; Actifcare Consortium. Trajectories of relationship quality in dementia: a longitudinal study in eight European countries. Aging Ment Health. 2022 Nov;26(11):2307-2315. doi: 10.1080/13607863.2021.1969641.
In this collaborative INTERDEM article, the aim was to explore Relationship Quality (RQ) trajectories in dementia, and identify predictors of change. Longitudinal data were collected from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. Results showed that RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers’ RQ, whereas social support was associated with more positive RQ trajectories. The authors stress the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.
Available here
For the publication of the month October, the website committee selected the following publication:
Molinari-Ulate, M., Mahmoudi, A., Franco-Martín, M. A., & van der Roest, H. G. (2022). Psychometric Characteristics of Comprehensive Geriatric Assessments (CGAs) for long-term care facilities and community care: A Systematic Review. Ageing Research Reviews, 101742.
Comprehensive Geriatric Assessments (CGAs) have been incorporated as an integrated care approach effective to face the challenges associated to uncoordinated care, risk of hospitalization, unmet needs, and care planning experienced in older adult care. This review reports on the psychometric properties and content of the CGAs for long-term and community care. Three CGAs were identified for long-term care settings and seven for community care. Evidence for good to excellent validity and reliability was reported for various instruments. Setting more specific and clear domains, associated to the special needs of the care setting, could improve informed decisions at the time of selecting and implementing a CGA. Considering the amount and quality of the evidence, the instrument development trajectory, the validation in different languages, and availability in different care settings, the authors recommend the interRAI LTCF and interRAI HC to be used for long-term facilities and community care.
Available here
For the publication of the month September, the website committee selected the following publication:
Chirico I, Giebel C, Lion K, Mackowiak M, Chattat R, Cations M, Gabbay M, Moyle W, Pappadà A, Rymaszewska J, Senczyszyn A, Szczesniak D, Tetlow H, Trypka E, Valente M, Ottoboni G. (2022). Use of technology by people with dementia and informal carers during COVID-19: A cross-country comparison. Int J Geriatr Psychiatry. 37(9). doi: 10.1002/gps.5801.
This study aimed to explore the use of technology and its perceived effects across different settings and countries. The sample included 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants’ experiences of using technology and their perceived effects. Three themes emerged from the data: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help from carers were also necessary and sometimes perceived as an additional burden. Furthter actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.
For the publication of the month August, the website committee selected the following publication:
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Thalén L, Malinowsky C, Margot-Cattin I, Gaber SN, Seetharaman K, Chaudhury H, Cutchin M, Wallcook S, Anders K, Brorsson A, Nygård L. (2022). Out-of-home participation among people living with dementia: A study in four countries. Dementia (London). 1(5):1636-1652. doi: 10.1177/14713012221084173.
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Social participation in out-of-home activities is important for people living with dementia, yet little is known about such participation. The aim of this study was to explore and compare out-of-home participation among people living with dementia in four countries by assessing different types of places of participation visited or no longer visited. A cross-sectional design was used to gather self-reported experiences concerning out-of-home participation among people with mild stage dementia living in Canada (n = 29), Sweden (n = 35), Switzerland (n = 35) and the UK (n = 64). Interviews were conducted using the Participation in ACTivities and places OUTside the Home for older adults (ACT-OUT) instrument. Participants still visited 16 (Median) places out of a possible total of 24, and they had abandoned 5 (Median) places. Neighbourhood was the place most participants still visited, whereas 50% of them had stopped going to a Sports facility, with no significant differences between country samples regarding how many participants had abandoned that place (Fisher’s exact test, p > 0.01). There were significant differences between country samples in the frequency of present participation and abandonment of the Hospital, Dentist’s office, Cemetery, Garden, and Forest (Fisher’s exact test, all p < 0.01). Although the participants still visited a variety of places, they had stopped going to places previously visited, which indicates reductions in participation, posing an inherent risk to well-being. The similarities and differences across samples from the four countries suggest that healthcare services and access to public transport may contribute to the complex interactional process of out-of-home participation for people living with dementia. The findings highlight the need for initiatives targeting specific types of places to support continued participation in society, especially places at a higher risk of abandonment such as places for recreation and physical activity.
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For the publication of the month July, the website committee selected the following publication:
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Telenius, E. W., Tangen, G. G., Eriksen, S., & Rokstad, A. M. M. (2022). Fun and a meaningful routine: the experience of physical activity in people with dementia. BMC Geriatrics, 22(1), 1-10. https://doi.org/10.1186/s12877-022-03149-6
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Physical activity is important to health and wellbeing. People with dementia are less physically active than their cognitively healthy counterparts. Reasons for this are multifaceted, and are thought to be social, psychological, and physiological. People with dementia often use services such as home care, day care centres and nursing home, and according to the stage of disease they are less or more dependent on other people to take part in activities. To develop appropriate services to this patient group, their needs and preferences regarding physical activity must be recognized. The aim of the study was therefore to provide insight into experiences with physical activity in people with dementia. METHODS: The current study is part of a larger research project on needs in people with dementia. The main project included qualitative semi-structured interviews with 35 persons with dementia. 27 of the participants talked about their experience with physical activity. In the current study, the relevant findings on this theme were analysed separately. A phenomenological hermeneutic research design was applied. RESULTS: The analysis revealed three main categories regarding experiences with physical activity. To be physically active provided positive experiences such as feelings of mastering and post-exercise euphoria. To be physically active was meaningful. The daily walk was an important routine to many, and it gave meaningful content to the day. Keeping up with activities confirmed identity. Lastly, to be active was perceived as challenging. Participants described different barriers to being physically active such as a decline of physical function, lack of motivation and being dependent on others to go out. CONCLUSIONS: Many of the participants expressed that being physically active was important to them. It is essential that informal and formal carers are aware of the role physical activity plays in the lives of many people with dementia, so that appropriate measures can be taken to assure continued active living in order to preserve health and quality of life.
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For the publication of the month June, the website committee selected the following publication:
Gaber SN, Thalén L, Malinowsky CW, Margot-Cattin I, Seetharaman K, Chaudhury H, Cutchin M, Wallcook S, Kottorp A, Brorsson A, Biglieri S, Nygård L. Social Citizenship Through Out-of-Home Participation Among Older Adults With and Without Dementia. J Appl Gerontol. 2022′ doi: 10.1177/07334648221112425.
There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada (n = 58), Sweden (n = 69), Switzerland (n = 70), and the United Kingdom (n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation (p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.
For the publication of the month May, the website committee selected the following publication about characteristics of dementia friendly hospitals:
Manietta C, Purwins D, Reinhard A, Knecht C, Roes M. Characteristics of dementia-friendly hospitals: an integrative review. BMC Geriatr. 2022 May 31;22(1):468. doi: 10.1186/s12877-022-03103-6. PMID: 35641899.
The authors did an integrative review to assess characteristics of dementia friendly hospitals. Six characteristics were found: continuity, person-centeredness, consideration of phenomena within dementia and environment, valuing relatives and knowledge and expertise within the hospital. The authors suggest to do further research to better take into account the perspectives of people with dementia.
The website committee has chosen the following as article of the month April:
D’Andrea F, Tischler V, Dening T, Churchill A. Olfactory stimulation for people with dementia: A rapid review. Dementia. April 2022. doi:10.1177/14713012221082377
This study used a mixed methods approach to synthesise the evidence on olfactory stimulation in dementia care. In particular, this review (1) synthesised the qualitative and quantitative evidence on the impact of olfactory stimulation on responsive behaviours, cognitive function, communication, quality of life, pain and physical functioning; (2) assessed the effects of different types of scents used and identify, if any, patterns in their effects and (3) reviewed the different ways in which olfactory stimuli are administered and identify, if any, patterns in their effects.
Mixed results were reported on the benefits of olfactory stimulation on responsive behaviours and cognitive function. Although the evidence available is limited, encouraging results were found regarding olfactory stimulation and increased sleep duration, food intake and improved balance. Overall, the review shows promising results that support further investigation of olfactory stimulation as a nonpharmacological intervention for people with dementia.
The website committee has chosen the following as article of the month March:
Carbone, E., Piras, F., Pastore, M., & Borella, E. (2022). The Role of Individual Characteristics in Predicting Short- and Long-Term Cognitive and Psychological Benefits of Cognitive Stimulation Therapy for Mild-to-Moderate Dementia. Frontiers in aging neuroscience, 13, 811127. https://doi.org/10.3389/fnagi.2021.811127
There is a growing body of evidence of the benefits of Cognitive Stimulation Therapy on cognitive and emotional/behavioural functioning, and quality of life in people with mild-to-moderate dementia. This study explored whether and to what extent individual characteristics of people with dementia might predict the cognitive, behavioural, and psychological benefits of CST (Italian version) in the short and longer term. A complex picture emerged, depending on the outcome measures considered. Higher education predicted larger gains in general cognitive functioning and, along with less severe depressive symptoms, in language (magnification effects). Older age was associated with positive changes in mood (compensation effects). Albeit very modestly, older age was also associated with larger gains in everyday functioning (compensation effects). Gains in quality of life were predicted by older age and lower education (compensation effects). Baseline cognitive functioning, mood and/or behavioural symptoms broadly influenced performance too,
but their role again depended on the outcomes considered. These findings underscore the importance of considering and further exploring how psychosocial interventions like CST are affected by individual characteristics in order to maximize their efficacy for people with dementia .
To read here
The website committee has chosen the following as article of the month February:
Collins, R., Hunt, A., Quinn, C., Martyr, A., Pentecost, C., & Clare, L. (2022). Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: Findings from the IDEAL programme. Dementia. https://doi.org/10.1177/14713012211069449
This study aims to identify methods, tools and approaches that could facilitate meaningful communication with people with moderate-to-severe dementia and support the inclusion of their perspectives. In-depth, semi-structured interviews were conducted with 17 dementia research and/or care professionals with expertise in communication. Findings highlight the fundamental importance of person-centred conversations, getting to know the participant and developing a bi-directional conversation. There is evidence for the potential utility of communication, based around personalized pictures, photographs or objects, and adapting them to the preferences and abilities of each person with moderate-to-severe dementia.
To read here
The website committee has chosen the following as article of the month January:
Kowe A, Köhler S, Görß D, Teipel S. The patients’ and caregivers’ perspective: In-hospital navigation aids for people with dementia- a qualitative study with a value sensitive design approach. Assist Technol. 2022 Jan 12:1-10. doi: 10.1080/10400435.2021.2020378. Epub ahead of print. PMID: 34919023
Orientation and navigation for people with dementia becomes increasingly difficult, due to cognitive decline. But many people are also affected by topographical disorientation, the inability to orient and navigate in the real environment. Where finding your way in a hospital is already difficult for people without cognitive impairment, it is very challenging for people with dementia. While this is a group with frequent hospitalisations and longer lengths of stays, as compared to people without cognitive impairment. This study addresses an underreported setting in dementia care research, the hospital, and aims to contribute to the development of a needs-based in-hospital navigation aid. Using a value sensitive design, the researchers interviewed 10 persons with dementia and 10 informal carers. Besides design recommendations for an in-hospital navigation aid, also values were identified for the aid to be accepted for use. According to participants the aid should ensure the safety of the person with dementia, while maintaining their independence. Additionally, the aid should be of low complexity and simple to use, and training would increase the willingness to use the aid. The use of in-hospital navigation aids potentially have high benefit, they could counteract immobilisation and rehospitalisation which is common amongst people with dementia.
2017 - 2021
December 2021
Budak KB, Atefi G, Hoel V, Laporte Uribe F, Meiland F, Teupen S, Felding SA, Roes M. (2021) Can technology impact loneliness in dementia? A scoping review on the role of assistive technologies in delivering psychosocial interventions in long-term care. Disabil Rehabil Assist Technol. 9:1-13. doi: 10.1080/17483107.2021
In this scoping review the authors aimed to identify assistive technologies which could be promising in addressing loneliness in people living with dementia in long-term care. From all the included 24 publications, only one has directly measure the loneliness. However, the outcomes focusing on behaviour, engagement, and mood measures indicate that delivering psychosocial interventions via assistive technologies, including social robots and multimedia computer systems, have the potential to impact loneliness in people living with dementia in LTC.
To read here
October 2021
The website committee has chosen the following as article of the month October: Stamou, V., La Fontaine, J., O’Malley, M., Jones, B., Parkes, J., Carter, J., & Oyebode, J. R. (2022). Helpful post-diagnostic services for young onset dementia: Findings and recommendations from the Angela project. Health & social care in the community, 30(1), 142-153. doi: 10.1111/hsc.13383
There is a significant lack of evidence regarding optimum models for service provision in young onset dementia (YOD). Our study aim was to gather detailed information about services experienced as helpful by those with YOD and family carers. The objective was to identify the core features of these services to inform service design, delivery and improvements. A qualitative approach based on appreciative inquiry was used, posing open-ended questions about services experienced as helpful, as part of a national UK survey of people with YOD and carers. We used inductive thematic analysis to analyse the free-text responses. The resulting template was used as a basis for analysis of in-depth follow-up interviews, conducted to acquire greater in-depth understanding. Two hundred and thirty-three survey respondents provided 856 examples of helpful support. Twenty-four follow-up interviews were conducted (two with dyads, so 26 participants in total: 8 with people with YOD, 14 with carers, 2 with dyads). Twelve themes capturing the features of helpful services were clustered into three super-ordinate themes. ‘Person-centredness’ reflects micro levels of person-professional interaction (positive attitude, flexibility, collaborative, user-friendly materials, and in-person). ‘Functional consistency’ captures the meso level, demonstrating that services were helpful when organised consistently with needs (age-appropriate, holistic, responsive, and accessible). ‘Organisational coherence’, at the macro level, emphasises the need for service integration, specialist services and service continuity. Key conclusions are that the needs for flexibility and a collaborative stance may be particularly important for those under 65 years with dementia, who have full lives and are used to being in control; to be age-appropriate, helpful services need to provide activities and opportunities suitable for active middle-aged people; and to be holistic, services need to provide for needs associated with rare dementias and be family-centred. Specialist services need to be commissioned and arrangements need to be stable over time to enable continuity.
September 2021
Capstick, A., Dennison, A., Oyebode, J., Healy, L., Surr, C., Parveen, S., Sass, C. & Drury, M. (2021). Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia. Health Expectations, 24(5), 1890-1900. https://doi.org/10.1111/hex.13332
This study aimed to adapt the Patient and Public Involvement process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Nine people living with dementia and five family members participated in this study. Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on group members’ personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. Results show it was possible to adapt the PPI process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard.
To read here
August 2021
Lion, K., Szcześniak, D., Evans, S., Evans, S., Farina, E., Brooker, D., Charrat, R, Meiland, F., Rymaszewska, J. (2021). Can we reduce the stigmatisation experience with psychosocial interventions? An investigation of the meeting centre support programme impact on people with cognitive impairments. European Psychiatry, 64(S1), S137-S137. doi:10.1192/j.eurpsy.2021.378
This study aimed to investigate the stigmatisation level among people with dementia and mild cognitive impairment (MCI) in Poland, Italy and the United Kingdom and assess the role of the Meeting Centre Support Programme (MCSP) in decreasing stigmatisation. The authors investigated outcomes for 114 people who participated in the MCSP or usual care (UC) using a pre/post-test control group study design. Level of stigmatisation was assessed with the Stigma Impact Scale: neurological impairment (SIS). Results suggest that stigmatisation among people with dementia and MCI is complex and seems culturally dependent. There is a great opportunity in psychosocial interventions to reduce the burden of stigma among people with dementia which requires further investigation.
Can be read here
July 2021
The website committee selected for publication of the month July:
The prevalence of young onset dementia: A systematic review and meta-analysis. https://doi.org/10.1002/alz.042738
How common is young-onset dementia? In JAMA Neurology, a meta-analysis of Hendriks and colleagues (Maastricht University) including 74 studies encompassing 2.8 million adults ages 30 to 64 has been published. Overall, they estimate 119 per 100.000 people develop young-onset dementia, amounting to 3.9 million cases worldwide
June 2021
The website committee selected for publication of the month June:
Diaz A, Gove D, Nelson M, Smith M, Tochel C, Bintener C, Ly A, Bexelius C, Gustavsson A, Georges J, Gallacher J, Sudlow C. Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project. Health Expect. 2021 Jun;24(3):757-765. doi: 10.1111/hex.13246.
One of the goals of the ROADMAP (acronym for ‘real world outcomes across the Alzheimer’s Disease spectrum for better care: multi-modal data access platform’) project was to identify outcomes perceived important for people with dementia and their caregivers. The European Working Group of People with Dementia (EWGPWD) were invited to participate on the ROADMAP project and e.g. provide feedback on project materials and insight into terminology. In-person consultations with people with dementia and caregivers were organized. The EWGPWD promoted a better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings, among other important results. The role of the working group (in ROADMAP) showed to be highly influential.
May 2021
The website committee chose as publication of the month May: Pappadà et al. (2021) about Assistive technologies in Dementia Care.
The pandemic showed the potential of assistive technologies in supporting people with dementia and their carers. These technologies can help to improve dementia care. In this article a review of reviews was conducted regarding technological support for the mentioned target group, alongside a review of the studies run during the first pandemic wave.
30 Reviews and 9 new studies are summarized according to target group and type of technology. Benefits were found for persons with dementia (staying in touch with others, stimulate cognitive functions or sustain daily living and instrumental activities) and carers (mental health, skills learning, and social aspects). The quality of the reviews was high, there was much methodological heterogeneity among the studies.
The authors conclude that technologies were well-accepted and can be valuable in bypassing physical and environmental problems both during regular times and during future pandemic waves.
Full reference: Pappadà A, Chattat R, Chirico I, Valente M and Ottoboni G (2021) Assistive Technologies in Dementia Care: An Updated Analysis of the Literature. Front. Psychol. 12:644587. doi: 10.3389/fpsyg.2021.644587
April 2021
The website committee selected for publication of the month April:
Chirico, I., Ottoboni, G., Valente, M. and Chattat, R. (2021), Children and young people’s experience of parental dementia: A systematic review. Int J Geriatr Psychiatry. https://doi.org/10.1002/gps.5542
Increasing numbers of young people have a parent with dementia (young onset dementia). While there is extensive literature on the experiences and needs of spouses/partners and adult children of people with dementia, no systematic review has been conducted on the psychosocial impact of parental dementia on young people’s development. Young people living and/or caring for a parent with dementia are likely to experience significant changes in family relationships in terms of providing significant support to both parents and keeping family together. Parental dementia is likely to affect young people’s choices, time perspectives and life planning in relation to education/career, mobility and personal lives. Appropriate support and care services are urgently needed to suit the needs of this population within a ‘whole family’ approach.
March 2021
Horstkötter, D., Deckers, K., & Köhler, S. (2021). Primary Prevention of Dementia: An Ethical Review. J Alzheimers Dis, 79(2), 467-476. doi: 10.3233/jad-201104
Dementia poses important medical and societal challenges, and of all health risks people face in life, dementia is one of the most feared. Recent research indicates that up to about 40% of all cases of dementia might be preventable. A series of environmental, social, and medical risk-factors have been identified that should be targeted from midlife onwards when people are still cognitively healthy. At first glance, this seems not merely advisable, but even imperative. However, these new developments trigger a series of new ethical questions and concerns which have hardly been addressed to date. Pro-active ethical reflection, however, is crucial to ensure that the interests and well-being of those affected, ultimately all of us, are adequately respected. This is the goal of the current contribution. Against the background of a concrete case in primary dementia prevention, it provides a systematic overview of the current ethical literature and sketches an ethical research agenda. First, possible benefits of increased well-being must be balanced with the burdens of being engaged in particularly long-term interventions for which it is unclear whether they will ever pay out on a personal level. Second, while knowledge about one’s options to maintain brain health might empower people, it might also undermine autonomy, put high social pressure on people, medicalize healthy adults, and stigmatize those who still develop dementia. Third, while synergistic effects might occur, the ideals of dementia prevention might also conflict with other health and non-health related values people hold in life.
February 2021
Emma Wolverson et al. “The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia, published in the Journal of Advanced Nursing (JAN).
The study aimed to explore the opinions of people with dementia, about the language used to describe changes in behaviour associated with dementia and used a human rights approach in a mixed methods convergent parallel synthesis design. People with dementia raised concerns about the language used to describe changes in behaviour that can occur in dementia. Although there was no agreement on terminology, the preference towards terms reflecting the unmet needs likely to underline perceived changes in behaviour. There is scope for improvements in the language used for this paradigm in both research and practice.
January 2021
The website committee has chosen the following article as publication of the month January:
Scerri, A, Sammut, R, Scerri, C. Formal caregivers’ perceptions and experiences of using pet robots for persons living with dementia in long‐term care: A meta‐ethnography. J. Adv. Nurs. 2021; 77: 83– 97. https://doi.org/10.1111/jan.14581
The study describes the results of a meta-ethnography synthesizing evidence from recently published papers on the perceptions of formal caregivers using pet-robots for people with dementia living in residential care. It concludes that while pet robots can have emotional, social, behavioural, and practical benefits, there are several technological, organizational and contextual challenges and limitations that constrain their routine use. The possible findings synthesized could be of benefit to robot designers by identifying the technical adjustments needed, to facility managers and policy makers by understanding the organizational factors influencing implementation and developing realistic action plans and to other healthcare professionals by appreciating the benefits of introducing pet robots as a therapy in long‐term care settings.
December 2020
The website committee has chosen the following article as publication of the month December:
Du B, Lakshminarayanan M, Krishna M, Vaitheswaran S, Chandra M, Kunnukattil Sivaraman S, Goswami SP, Rangaswamy T, Spector A, Stoner CR. Psychometric properties of outcome measures in non-pharmacological interventions of persons with dementia in low-and middle-income countries: A systematic review. Psychogeriatrics. 2020 Dec 17. doi: 10.1111/psyg.12647. Epub ahead of print. PMID: 33336529.
In this systematic review outcome measures that are used in Low and Middle income countries to evaluate non-pharmacological interventions were assessed on psychometric properties. 18 measures for cognition, behaviour and psychologicial symptoms, and quality of life were valued as modest at best. The authors mention an urgent need to develop scientifically robust measures for use in these countries.
November 2020
The website committee selected the following publication of the month for November 2020:
“Toward a theory-based specification of non-pharmacological treatments in aging and dementia: Focused reviews and methodological recommendations”
Sikkes, S.A.M., Tang, Y., Jutten, R.J., Wesselman, L.M.P., Turkstra, L.S., Brodaty, H., Clare, L., Cassidy-Eagle, E., Cox, K.L., Chételat, G., Dautricourt, S., Dhana, K., Dodge, H., Dröes, R.-M., Hampstead, B.M., Holland, T., Lampit, A., Laver, K., Lutz, A., Lautenschlager, N.T., McCurry, S.M., Meiland, F.J.M., Morris, M.C., Mueller, K.D., Peters, R., Ridel, G., Spector, A., van der Steen, J.T., Tamplin, J., Thompson, Z. & Bahar-Fuchs, A. on behalf of the ISTAART Non-pharmacological Interventions Professional Interest
In the systematic overview paper, experts in Non-pharmacological treatments (NPT) have used umbrella theoretical framework to classify research in NPT in the context of aging and dementia studies, identify key challenges for different NPTs, and provide methodological guidelines for the design of future trials of NPTs. Applying the Rehabilitation Treatment Specification Framework (RTSS), the authors defined and specified the targets and ingredients of 13 nonpharmacological treatments (NPTs), including cognitive training, cognitive rehabilitation, physical exercise training or communication treatments. The evidence supports the efficacy of most NPTs in relation to their primary targets and indicates that RTSS are likely to make important contributions to our ability to specify existing treatment, design new treatment trials, and synthesize the evidence.
https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.12188#
October 2020
“Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project”
Røsvik, J,. Michelet, M., Engedal, K., Bergh, S., Bieber, A., Gonçalves-Pereira, M., Portolani, D., Hopper., L., Irving.K., Jelley, H., Kerpershoek, L., Meyer, G., Marques, MJ., Sjølund, B., Sköldunger, A., Stephan, A., Verhey, F., de Vugt, M., Woods, B., Wolfs, C., Zanetti, O. & Selbæk, G.
This article describes the development of best-practice recommendations on the access to, and use of formal care services. A Delphi consensus process was conducted among professional experts (n=48), people with dementia (n=14), and informal caregivers (n=20). Three categories of recommendations emerged, being recommendations to enhance access (for example having a key contact person), recommendations to enhance use, and recommendations that can facilitate access or use indirectly. These recommendations may be of further use to decision makers to improve the quality of care and quality of life of people with dementia and their informal caregivers. Link to the article: https://pubmed.ncbi.nlm.nih.gov/33030026/
September 2020
The website committee selected as publication of the month September:
Giebel, Clarissa, Kathryn Lord, Claudia Cooper, Justine Shenton, Jacqueline Cannon, Daniel Pulford, Lisa Shaw et al. “A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers.” International Journal of Geriatric Psychiatry.
This is the first study to quantify how the pandemic has impacted social support service availability, and to explore the impact of this on the lives of older adults and people living with dementia across the UK. A total of 569 participants were involved in the study. Findings suggest that social support service usage was significantly reduced post Covid-19 and that failure to access these contributed to worse quality of life and anxiety. Seeking alternative ways to re-provide support to meet the needs of those requiring social support are recommended.
August 2020
The website committee selected for publication of the month August:
Clarke, C., B. Woods, E. Moniz-Cook, G. Mountain, L. Øksnebjerg, R. Chattat, A. Diaz, D. Gove, M. Vernooij-Dassen and E. Wolverson (2020). “Measuring the well-being of people with dementia: a conceptual scoping review.” Health and quality of life outcomes 18(1): 1-14.
Enabling people with dementia to ‘live well’ is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach
This article takes a radically different approach and presents an assets/strengths-based framework, outlining structural domains for selecting self-report measures of well-being in people with dementia.
July 2020
The website committee selected as publication of the month July:
Verbeek, H., Gerritsen, D. L., Backhaus, R., de Boer, B. S., Koopmans, R. T., & Hamers, J. P. (2020). Allowing visitors back in the nursing home during the COVID-19 crisis–A Dutch national study into first experiences and impact on well-being. Journal of the American Medical Directors Association.
COVID-19 has had a big impact on both residents of nursing homes (most of them having dementia) and their families. This study looks into the first experiences and impact on well-being of the restrictive measures during the lockdown in The Netherlands. If no visits are allowed this has a big impact on well-being, but nursing homes face the dilemma of infection prevention versus allowing personal contacts. They seem to apply guidelines differently across individual locations. This is an issue with much relevance to all societies.
June 2020
For the month June, the website committee selected the following publication of the month:
Prins M, Veerbeek M, Willemse BM, Pot AM. Use and impact of the Alzheimer Experience: a free online media production to raise public awareness and enhance knowledge and understanding of dementia. Aging Ment Health. 2020. Jun;24(6):985-992. doi: 10.1080/13607863.2019.1579781. Epub 2019 Mar 5. PMID: 30835497.
To tackle stigmatization associated with dementia, in 2012 the Alzheimer Experience was developed. This free online media production, that virtually follows the life of two persons with dementia, shows people what it is like to have dementia, in order to improve their knowledge and understanding of dementia. This study describes the results of the evaluation of the Alzheimer Experience.
May 2020
The website committee selected the following paper for the Interdem paper of the month by two German Interdem colleagues :
“Halek M, Reuther S, Müller-Widmer R, Trutschel D, Holle D.” Dealing with the behaviour of residents with dementia that challenges: A stepped-wedge cluster randomized trial of two types of dementia-specific case conferences in nursing homes (FallDem). Int J Nurs Stud. 2020;104:103435. doi:10.1016/j.ijnurstu.2019.103435
This study describes the effects of two dementia-specific case conferencing models on the prevalence of behavior that challenges others. This is important as understanding the behaviour of people with dementia and its underlying causes is necessary to enable the use of purposive nursing interventions. The paper finds that Comprehensive analysis of residents´ behaviour within case conferences does not reduce the prevalence of residents showing behavioural changes. Exploratory analysis shows trends that case conferences may reduce the prevalence of single behaviours such as apathy, delusion, hallucination, disinhibition, and eating and nighttime behaviour and have the potential to reduce the work-related burden of staff in nursing homes.
April 2020
The Interdem Website Committee has chosen the following as Publication of the Month April. This article focuses on a relevant and timely topic – the importance of staying connected.
Clark, A., Campbell, S., Keady, J.(INTERDEM), Kullberg, A., Manji, K., Rummery, K., & Ward, R. (2020). Neighbourhoods as relational places for people living with dementia. Social Science & Medicine.
The paper details some of the implications of neighbourhoods as sites of social connection based on material from 67 people living with dementia and 62 care-partners. It provides new insight into how people living with dementia experience the places where they live, and how those places can support people to live as independently as possible with the condition. Using a mixed methodology, the paper extends empirical and conceptual understanding of the relevance of neighbourhoods as relational sites of connection, interaction, and social engagement for people living with dementia.
March 2020
The Interdem Website Committee has chosen a paper dedicated to loneliness as a Publication of the Month March.
Managing loneliness: a qualitative study of older people’s views by K. Kharicha, J. Manthorpe, S. Iliffe, C. A. Chew-Graham, M. Cattan, C. Goodman, M. Kirby-Barr, J. H. Whitehouse & K. Walters (Aging & Mental Health, 2020, https://doi.org/10.1080/13607863.2020.1729337).
Unlike the other months, we decided to make an exception and chose a paper which does not cover only people with dementia and/or their carer. We believe that loneliness is a very important issue, and its relevance increased during the extraordinary time of COVID-19 pandemic. This paper will be relevant for all people living with dementia and their carers who need to deal with social isolation, staying away from their families and friends.
Authors aimed to explore how community-dwelling lonely older people in England manage their experiences of loneliness. Participants in this study focused on a range of strategies to ameliorate their distress which had been developed over their lives and shaped according to individual coping styles and contexts. Older people also conveyed a personal responsibility for managing feelings of loneliness rather than relying on others. This paper also presents practical recommendations for policy developments and responses to manage loneliness in a better way, based on obtained outcomes.
February 2020
The website committee has chosen the following article as publication of the month February:
Yu-Tzu Wu, Sharon M Nelis, Catherine Quinn, Anthony Martyr, Ian R Jones, Christina R Victor, Martin Knapp, Catherine Henderson, John V Hindle, Roy W Jones, Michael D Kopelman, Robin G Morris, James A Pickett, Jennifer M Rusted, Jeanette M Thom, Rachael Litherland, Fiona E Matthews, Linda Clare, the IDEAL Programme team, Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme, Age and Ageing, https://doi.org/10.1093/ageing/afz177
The authors compare self- and informant ratings of quality of life, life satisfaction and well-being. The study shows that self- and informant ratings are not equivalent in this areas. Importantly, even though this is the case, the relationships with other underlying factors are comparable. Both approaches can provide useful information for research examining factors associated with these living well measures.
January 2020
The website committee selected for the article of the month January: Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia. Roberts C, Rochford-Brennan H, Goodrick J, Gove D, Diaz-Ponce A, Georges J. Dementia (London). 2020 Jan;19(1):10-17. doi: 10.1177/1471301219876402.
This article is a follow-up of the one on the Patient and Public Involvement paper (Gove et al 2018), where 7 key areas were outlined to help progress PPI. In this new article, members of the European Working Group of People with Dementia reflect on some of these areas that they consider important, and share how people with dementia can be valued and involved in an optimal way. This will lead to a win-win situation for all involved in dementia research, and thus this is an important publication for (INTERDEM) researchers.
December 2019
The website committee has chosen the following article as publication of the month December
Stoner, C.R., Lakshminarayanan, M., Durgante, H. & Spector, A. (Dec 2019). Psychosocial interventions for dementia in low- and middle-income countries (LMICs): a systematic review of effectiveness and implementation readiness. Aging & Mental Health. https://doi.org/10.1080/13607863.2019.1695742
Little is known about the effectiveness and implementation readiness of psychosocial interventions for people with dementia in low- and middle- income countries. This systematic review evaluated 17 articles describing 11 interventions (e.g. occupational therapy, Cognitive Stimulation Therapy). Of the included studies, Cognitive Stimulation Therapy appears to be the most implementation ready. Other interventions were judged similarly effective, but data was lacking on the implementation readiness.
November 2019
The website committee has chosen the following article as publication of the month November
Vernooij-Dassen, M., Moniz-Cook, E., Verhey, F., Chattat, R., Woods, B., Meiland, F., Franco, M., Holmerova, I., Orrell, M. & de Vugt, M. (Nov 2019). Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto. Aging & Mental Health. https://doi.org/10.1080/13607863.2019.1693968
To date, dementia research appears to have developed with little interaction between biomedical and psychosocial approaches. This manifesto, written by members from the INTERDEM network, describes a new perspective on integrated biomedical and psychosocial dementia research and concludes with a call to action.
October 2019
The Interdem website committee has chosen the following article as publication of the month October 2019: Sass, C., Burnley, N., Drury, M., Oyebode, J., & Surr, C. (2019). Factors associated with successful dementia education for practitioners in primary care: an in-depth case study. BMC medical education, 19(1), 393.
Doing research to identify the ingredients of good dementia care is one thing, transferring them to practice another. This article focuses on how to embed good dementia care in education for primary care professionals (e.g. general practitioners). That is an important professional group, caring for many people with dementia still living in the community. The article concludes with some key recommendations that everybody developing or giving dementia training should be aware of.
The article is available in open access at https://link.springer.com/content/pdf/10.1186%2Fs12909-019-1833-2.pdf.
September 2019
The website committee has chosen the following article as publication of the month September
Yates, L., Csipke, E., Moniz-Cook, E., Leung, P., Walton, H., Charlesworth, G., … & Orrell, M. (2019). The development of the Promoting Independence in Dementia (PRIDE) intervention to enhance independence in dementia. Clinical Interventions in Aging, 14, 1615. – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6748161/
The Promoting Independence in Dementia (PRIDE) program aims to better understand the factors associated with cognitive decline and “excess disability” and to design and evaluate an evidence-based approach to maintaining independence in people with mild dementia. This article describes the underlying theory and proposed mechanisms of change for the PRIDE intervention, a 3-session, manualized, postdiagnostic social intervention to help people with dementia live as well and as independently as possible in the community through engagement in cognitive, physical, and social activities.
August 2019
The website committee has chosen the following article as publication of the month August: August_2019. https://doi.org/10.1016/j.invent.2019.100260 [In press] Interdem members’ study investigated if effective “eHealth interventions” for caregivers of people with dementia were implemented after the research trials. Authors suggest that internet-based interventions have low levels of implementation readiness and often important information to assess this aspect of intervention was unavailable. Authors found only two studies which obtained long-term funding from foundations after the research phase and suggest that more research should focus on the factors enabling sustainable implementation of tested interventions in the future.
July 2019
The website committee selected as paper of the month July: Charras K, Dramé M. Treatment Indications in Clinical Practice and Applied Research on Psychosocial Interventions for People With Dementia. Am J Alzheimers Dis Other Demen. 2019 Jul 17:1533317519859213. doi: 10.1177/1533317519859213 [Epub ahead of print].
This paper addresses the fact that clinical trials fail to prove effectiveness of psychosocial interventions for people with different types and levels of severity of dementia. Reviewing 12 Cochrane papers the authors provide an understanding of how and to what extent treatment indications, which are normal in pharmacological treatments, should be involved in psychosocial interventions. Several implications and recommendations for research and clinical practice with regard to treatment indications for psychosocial interventions are provided, to improve the effectiveness of these interventions.
June 2019
The website committee selected the publication by Astell et al. for publication of the month June.
In this article “Technology and Dementia: The Future is now” a nice overview is given of current technology use in dementia, based on the input from members of the US Alzheimer’s Association Technology Professional Interest Area. Many developments have taken place, however policy and practice lay behind. The authors suggest to broaden the view of supporting people with dementia beyond health care and call upon for policies that provide people with dementia and their caregivers access to devices, services and other tools to live as well as possible with their condition.
The abstract:
Background: Technology has multiple potential applications to dementia from diagnosis and assessment to care delivery and supporting ageing in place. Objectives: To summarise key areas of technology development in dementia and identify future directions and implications. Method:Members of the US Alzheimer’s Association Technology Professional Interest Area involved in delivering the annual pre-conference summarised existing knowledge on current and future technology developments in dementia. Results: The main domains of technology development are as follows: (i) diagnosis, assessment and monitoring, (ii) maintenance of functioning, (iii) leisure and activity, (iv) caregiving and management. Conclusions: The pace of technology development requires urgent policy, funding and practice change, away from a narrow medical approach, to a holistic model that facilitates future risk reduction and prevention strategies, enables earlier detection and supports implementation at scale for a meaningful and fulfilling life with dementia.
Reference:
Astell AJ, Bouranis N, Hoey J, Lindauer A, Mihailidis A, Nugent C, Robillard JM; Technology and Dementia: The Future is Now. Dement Geriatr Cogn Disord. 2019;47(3):131-139. doi: 10.1159/000497800. Epub 2019 Jun 27. PubMed PMID: 31247624.
May 2019
WHO guidelines on Risk reduction of cognitive decline and dementia
Two years after The Lancet commission on dementia published their report and advised everybody to “be ambitious about prevention”, the World Health Organisation published guidelines on risk reduction for cognitive decline and dementia.
WHO Director-General Dr Tedros Adhanom Ghebreyesus summarized the key message: “We need to do everything we can to reduce our risk of dementia. The scientific evidence gathered for these Guidelines confirm what we have suspected for some time, that what is good for our heart, is also good for our brain.”
The WHO guidelines provide an overview of much of the existing research on 12 risk or protective lifestyle (e.g. physical activity, social activity, …) and health (e.g. hypertension) factors that can be influenced to reduce the risk on dementia.
Interdem-member Sebastian Koehler (University of Maastricht) collaborated on these WHO guidelines as member of the external review group.
The full document can be found in different languages at https://www.who.int/mental_health/neurology/dementia/guidelines_risk_reduction/en/
April 2019
Coughlan, G., Coutrot, A., Khondoker, M., Minihane, A.-M., Spiers, H., & Hornberger, M. (2019). Toward personalized cognitive diagnostics of at-genetic-risk Alzheimer’s disease. Proceedings of the National Academy of Sciences, 201901600. doi:10.1073/pnas.1901600116
In short: the authors used spatial navigation big data (n = 27,108) from the Sea Hero Quest (SHQ) game to investigate whether big data can be used to benchmark a highly phenotyped healthy aging laboratory cohort into high- vs. low-risk persons based on their genetic and demographic risk factors. They wanted to see whether data of the mobile virtual reality game SHQ could assist in discriminating healthy aging from genetically at-risk individuals of Alzheimer’s disease (AD). Results support supports the hypothesis that suboptimal navigation performance is present in preclinical AD and that this is detectable on levels of the SHQ game. Thus, spatial navigation emerges as a promising cognitive fingerprint, which can complement existing biomarkers for future AD diagnostics and disease intervention outcome measures.
March 2019
For the month March the website committee selected the paper of Salminen KS, Suominen MH, Soini H, Kautiainen H, Savikko N, Saarela RKT, Muurinen S, Pitkala KH. Associations between Nutritional Status and Health-Related Quality of Life among Long-Term Care Residents in Helsinki. J Nutr Health Aging. 2019;23(5):474-478
The authors have conducted a cross-sectional study among 2160 older people residing in long-term care settings in Helsinki, Finland. This paper showed that nutritional status was significantly associated with health related quality of life among residents living in long-term care settings. Furthermore, residents had a higher chance of suffering from malnutrition, if they were more dependent in activities of daily living (ADL) functioning, suffered more often from dementia, had lower cognitive level, used less medications, and were eating more often inadequately.
Results of the study emphasize that nutrition is a very important element in maintaining health-related quality of life of older people living in long-term care settings.
February 2019
For the month February the website committee selected the paper of Woods B, Arosio F, Diaz A, et al. Timely diagnosis of dementia? Family carers’ experiences in 5 European countries. Int J Geriatr Psychiatry. 2019;34:114–121. https://doi-org.vu-nl.idm.oclc.org/10.1002/gps.4997 .
This study looks into what extent timely diagnosis of dementia are provided in Europe, associated factors associated, and the impact of the quality of diagnostic disclosure on caregivers. A survey was conducted amongst 1.409 informal carers, who recruited through five Alzheimer’s Associations in Czech Republic, Finland, Italy, the Netherlands, and Scotland.
Almost half of the respondents felt hat an earlier diagnosis would be more useful. Identified factors identified associated with delayed diagnoses were refusal by the person with dementia, professional attitudes, lack of awareness, and system delays.
Although timely diagnosis of dementia is recommended in national strategies, and professional attitudes seem to improve, the findings do not indicate that the proportion of timely diagnoses is improving in Europe. More work on public awareness and professional responses is needed to improve this.
May 2018
The paper of Morgan et al (2018) has been selected as paper of the month.
This review paper, published in May 2018 in Palliative Medicine, makes an important contribution to an area of limited research, dying at home for people living with dementia.
See: Mogan, C., Lloyd-Williams, M., Harrison Dening, K. and Dowrick, C., 2018. The facilitators and challenges of dying at home with dementia: A narrative synthesis. Palliative Medicine, 32(6), pp.1042-1054.
Abstract
Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia.
Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia.
Design: Narrative synthesis of qualitative and quantitative data.
Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017.
Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’.
Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.
January 2019
For January, the website committee selected as publication of the Month, the paper of Auer, S, Höfler, M, et al., 2018. Cross-sectional study of prevalence of dementia, behavioural symptoms, mobility, pain and other health parameters in nursing homes in Austria and the Czech Republic: results from the DEMDATA project. BMC Geriatrics (2018) 18:178, https://doi.org/10.1186/s12877-018-0870-8
This paper described the results from the DEMDATA study, which is carried out in nursing homes by our members Stefanie Auer in Austria and Iva Holmerova in Czech Republic. This is a nice example of how people work together in our INTERDEM network.
December 2018
The INTERDEM website committee selected as paper of the month December: Implementation and impact of unforgettable: an interactive art program for people with dementia and their caregivers. It was published last summer.
The paper describes research into the Unforgettable initiative. This is a program developed by MoMa in New York and it consists of interactive guided museum tours for people living with dementia and their caregivers. The article describes the experienced facilitators and barriers for a successful implementation of this program in 12 museums in the Netherlands. The research indicated that museum employees and volunteers gained more positive attitudes towards dementia, thus decreasing stigmatization.
Hendriks, I., Meiland, F. J., Gerritsen, D. L., & Dröes, R.-M. (2018). Implementation and impact of unforgettable: an interactive art program for people with dementia and their caregivers. International Psychogeriatrics, advance access, 1-12.
November 2018
Thyrian, J.R., Michalowsky, B., Hertel, J., Wübbeler, M., Gräske, J., Holle, B., Schäfer-Walkmann, S., Wolf-Ostermann, K. and Hoffmann, W., (2018) How Does Utilization of Health Care Services Change in People with Dementia Served by Dementia Care Networks? Results of the Longitudinal, Observational DemNet-D-Study. Journal of Alzheimer’s Disease, (Preprint), pp.1-9.
This paper describes changes in health service use by people living with dementia who are served by dementia care networks in Germany. It also considers the factors associated with changes in service utilisation over time. The study was observational with face-to-face interviews over one year. The findings revealed that people living with dementia in dementia care networks had higher service use than the general population and this changed little over time.
October 2018
The INTERDEM website committee selected as paper of the month October 2018: Designing dementia-friendly gardens: A workshop for landscape architects: Innovative Practice. It was published in October 2018 in the journal Dementia.
The article describes the results of a collaboration between scientific researchers from INTERDEM, practice (long-term care) and education (architecture) on how to design dementia-friendly gardens within nursing homes. Often, outdoor spaces in nursing homes are inaccessible, unfit and poorly designed for people with cognitive impairment. This paper explains three approaches from a variaty of perspectives (scientific, pedagogical and practice-based) on how best to design gardens and outdoor space for people with dementia.
Designing dementia-friendly gardens: A workshop for landscape architects: Innovative Practice. Charras K, Bébin C, Laulier V, Mabire JB, Aquino JP. Dementia (London). 2018 Oct 25:1471301218808609.
September 2018
The INTERDEM website committee selected as paper of the month September: Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation by Øksnebjerg L. et al. was selected as an publication of the month September 2018. The paper was published in June 2018 and all authors are INTERDEM members.
This is an original article covering an important topic of which interventions people living with dementia may consider as meaningful. 25 people with dementia from 9 European countries participated in this study. Participants preferred psychosocial interventions that imply social engagement and inclusion. The indicted activities were connected to enjoyment, emotional experiences and enriching their self-esteem and identity, rather then only keeping them active during the day. These findings, that seem to be closely linked to positive psychology approach as well as social health concept, may help in development future psychosocial intervention dedicated to people living with dementia.
Øksnebjerg L, Diaz‐Ponce A, Gove D, et al. Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan‐European consultation. Health Expect. 2018;00:1–10. https://doi.org/10.1111/hex.12799
August 2018
The INTERDEM website committee selected as paper of the month August, the article by Wilz. et al. In this paper, secondary analyses were done to assess if individual goals of caregivers of people with dementia were met by a telephone intervention based on cognitive behavioural therapy. Personalised interventions and valuable outcomes for individuals receive more attention in the past decade. In this study the Goal attainment questionnaire was used to assess these valuable outcomes. Results showed that nearly all participants reported meaningful improvements with regard to their personal goals. Also, treatment compliance and implementation were highly satisfactory. To read more, please look at:
Wilz G, Weise L, Reiter C, Reder M, Machmer A, Soellner R. Intervention Helps Family Caregivers of People With Dementia Attain Own Therapy Goals. Am J Alzheimers Dis Other Demen. 2018 Aug;33(5):301-308. doi: 10.1177/1533317518769475. Epub 2018 Apr 16. PubMed PMID: 29660988
July 2018
The article of the month for July 2018 is written by Therése Bielsten and her colleagues (including John Keady, Interdem-member). This article focuses on couples where one of the partners has a diagnoses of dementia. It uses a qualitative methodology to identify the most relevant content for a guide to be used by such couples. The themes that were identified are home and neighbourhood (including safety and social relationships), meaningful activities (involvement in daily activities, meetings), approach and empowerment (informing others about the diagnosis) and couplehood (spending time together).
A self-management tool covering these subject areas can be developed. The authors have no knowledge of any self-management support already developed for couples as couple, as a dyad. Most interventions focus on the family caregivers and/or the wider social network.
Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia. Bielsten T, Lasrado R, Keady J, Kullberg A, Hellström I. Qual Health Res. 2018 Jul 1:1049732318786944. doi: 10.1177/1049732318786944. [Epub ahead of print] PMID: 30033851
June 2018
For the publication of the month June 2018, the website committee selected the article published by
Hopwood J, Walker N, McDonagh L, Rait G, Walters K, Iliffe S, Ross J, Davies N. Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review. J Med Internet Res 2018;20(6):e216. DOI: 10.2196/jmir.9548
This mixed-methods review explored the key components of internet-based interventions to support family caregivers of people with dementia, looked at which components were most valued by caregivers, and considered the evidence of effectiveness. Identified digital interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. This review seems to highlight the promising potential for the use of internet-based interventions by caregivers, though the evidence base for internet-based interventions for caregivers remains limited. There is a need for high-quality research, with a particular focus on the development of interventions targeting specific stages in the dementia trajectory, as most identified interventions were broad and generic.
April 2018
For the publication of the month April 2018, the website committee selected the article published by
Dianne Gove, Ana Diaz-Ponce, Jean Georges, Esme Moniz-Cook, Gail Mountain, Rabih Chattat, Laila Øksnebjerg & The European Working Group of People with Dementia (2017) Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement), Aging & Mental Health, 22:6, 723-729, DOI: 10.1080/13607863.2017.1317334
Patient and public involvement (PPI) in research has been recognized as important and meaningful. This does not only refer to involvement as study participants, but also to support in generating ideas for research, advising researchers and doing research activities. Alzheimer Europe drafted this position paper, together with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group ‘Dementia Outcome Measures – Charting New Territory’.
The paper describes several topics of PPI that may help in making PPI really meaningful and enhancing the research process instead of merely being used as ‘box thicking’.
March 2018
For the publication of the month march 2018, the website committee selected the article published by Joany Millenaar and her colleagues on the needs of young onset dementia caregivers. People with young onset dementia often still have children at home and their (past) employment might generate an important part of the household income. Consequently, the caregivers of somebody with young onset dementia are not only younger than those caring for an elderly person, but they also face a different set of challenges. Whether these caregivers experience low rather than high unmet needs is heavily influenced by understanding and accepting the diagnosis and the availability of social support.
Millenaar, J. K., Bakker, C., Vliet, D., Koopmans, R. T., Kurz, A., Verhey, F. R., & de Vugt, M. E. (2018). Exploring perspectives of young onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry, 33(2), 340-347.
February 2018
For the publication of the month March, the website committee selected the article entitled Are Humor Styles of People With Dementia Linked to Greater Purpose in Life? by Wingyun Mak and Silvia Sörensen recently published in The Gerontologist.
The study aimed to answer the question whether humor styles were associated with the purpose in life among people living with dementia. Authors found that only adaptive humor styles were linked to higher meaning of life and that sense of humor maybe be important in life of people with dementia.
The study also suggests that people with cognitive problems can still effectively use their sense of humor. These results also provide insight about some practical implications into trainings for people supporting people living with dementia, for example how to include using of sense of humor during their daily interactions.
Reference: Mak W, Sörensen S. Are Humor Styles of People With Dementia Linked to Greater Purpose in Life? Gerontologist, 2018, doi:10.1093/geront/gnx207
January 2018
The website committee selected the paper of J.A. García-Casal et al. This work describes the usability, reliability, and discriminant validity of a computer-based emotion recognition test, the Affect-GRADIOR, for elderly people with Alzheimer’s Disease (AD) and amnestic mild cognitive impairment (aMCI). Limited capacity in recognition of emotional facial expressions is more pronounced in people with AD and aMCI, and has been found to be predictive in the development of aMCI in AD. In addition especially processing speed of emotion recognition is impaired in people with AD and aMCI. Although participants had limited experience with computers, they found Affect-GRADIOR easy and comprehensible. The authors conclude that Affect-GRADIOR is reliable for the evaluation of recognition of facial emotions in older adults, and that the program had good discriminant properties to detect differences in emotion recognition between healthy controls and people with AD and aMCI, but discriminated poorly between people with aMCI and AD. This computer-based emotion recognition assessment can be a helpful tool in early screening and differential diagnoses, providing opportunities for early treatment.
Usability study and pilot validation of a computer-based emotion recognition test for older adults with Alzheimer‘s disease and amnestic mild cognitive impairment. García-Casal JA, Martínez-Abad F, Cid-Bartolomé T, Smith SJ, Llano-Ordóñez K, Perea-Bartolomé MV, Goñi-Imizcoz M, Soto-Pérez F, Franco-Martín M. Aging Ment Health. 2018 Jan 22:1-11. doi: 10.1080/13607863.2017.1423033. [Epub ahead of print]
December 2017
For the publication of the month December, the website committee selected an article that is a bit unusual in this series, but it relates to a very important landmark of the dementia movement: Global action plan on the public health response to dementia 2017–2025. The World Health Organization (WHO) has adopted a Global Action Plan on Dementia in May 2017 and it is now published in a more accessible document, see here.
http://apps.who.int/iris/bitstream/10665/259615/1/9789241513487-eng.pdf?ua=1
The plan includes actions for member states (all 194 countries that are member of WHO), WHO secretariat and regional and national offices as well as other stakeholders like Alzheimer associations and academic institutes. A key role for WHO is the Global Dementia Observatory that was launched this month and should serve as a data resource on prevalence, incidence and mortality on dementia and information about national plans and policies.
Many people have campaigned for dementia to become a global health priority. This WHO plan and Observatory are the result of that advocacy efforts. Interdem can contribute by promoting psycho-social research for dementia and support the work of WHO.
Reference: Global action plan on the public health response to dementia 2017–2025. Geneva: World Health Organization; 2017. Licence: CC BY-NC-SA 3.0 IGO.
The press release: http://www.who.int/mediacentre/news/releases/2017/dementia-triple-affected/en/
November 2017
A Social Model of Loneliness: The Roles of Disability, Social Resources, and Cognitive Impairment.
Burholt V, Windle G, Morgan DJ; CFAS Wales team.
Gerontologist. 2017 Nov 10;57(6):1020-1030. doi: 10.1093/geront/gnw125.
Published in The Gerontologist, this article draws on cognitive discrepancy theory to hypothesise a pathway from disability to loneliness in later life, whilst taking into account the mediating and moderating effects of the social environment and cognitive impairment. A model is drawn up based on cross-sectional data from a sample of 3,314 participants living in Wales. Whilst focusing on older individuals in general, this paper still holds important implications for dementia. E.g., cognitive impairment ws shown to have a greater effect on social resources than disability. The authors end by mentioning several strategies to alleviate loneliness and highlight the importance of dementia friendly communities in this context.
October 2017
The paper of Pini et al (2017) has been selected as paper of the month for October.
An open access paper published in October 2017 in The Gerontologist, this paper uses an innovative methodological approach to understand the impact of caring through a needs led framework. Needs are identified and the plausibility of these needs are compared with other needs led theories. The paper highlights the importance of looking beyond the individual and considering relationships in dementia strategies.
See: Pini, S., Ingleson, E., Megson, M., Clare, L., Wright, P. and Oyebode, J.R., 2017. A needs-led framework for understanding the impact of caring for a family member with dementia. The Gerontologist. https://doi.org/10.1093/geront/gnx148
ABSTRACT
Background and Objectives
Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers’ fulfilment of needs.
Design and Methods
In this qualitative study, we conducted 42 semistructured interviews with a purposively diverse sample of family carers to generate nuanced contextualized accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: “What need is being impacted here?” in order to generate a needs-led framework for understanding.
Results
Nine themes were widely endorsed. Each completed the sentence: “Being a carer impacts on fulfilling my need to/for….”: Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done.
Discussion and Implications
These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positive aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.
September 2017
The website committee selected the paper of Mausbach et al. as publication of the month September. This study links a psychosocial intervention for caregivers of people with Alzheimer’s Disease (adaptive coping by engaging in pleasant activities) to a medical outcome: blood pressure. The 126 participants were followed for five years. Greater engagement in pleasant leisure activities was associated with lowered caregivers’ blood pressure over time. Participation in pleasant leisure activities may have cardiovascular health benefits for Alzheimer’s caregivers.
Reference: Mausbach BT, et al. Engagement in Pleasant Leisure Activities and Blood Pressure: A 5-Year Longitudinal Study in Alzheimer Caregivers. Psychosom Med. 2017 Sep;79(7):735-741. PMID: 28640179
August 2017
For the month August, the website committee selected the report of Moniz-Cook et al., 2017 in which several INTERDEM colleagues collaborated.
The report refers to a comprehensive study regarding challenging behaviors in dementia and in care homes. It reports a conceptual overview, two systematic reviews, review of clinical guidelines, the development of an intervention, its evaluation in a cluster randomized trial with process evaluation of implementation and an observational cohort study of people with challenging behavior. Even though the trial did not show effectiveness on challenging behavior, its comprehensiveness summarizes the current state of art and gives important details and suggestions for future work.
Reference: Moniz-Cook E, Hart C, Woods B, Whitaker C, James I, Russell I, et al. Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families. Programme Grants Appl Res 2017; 5 (15).
It is available online here:
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0096891/pdf/PubMedHealth_PMH0096891.pdf
July 2017
The paper of Thyrian et al., 2017 was selected as publication of the month July. This paper, published in a high impact journal, describes a large randomized clinical trial (634 people with dementia) on the safety and effectiveness of dementia care management compared to care as usual. It shows that dementia care management is a safe intervention that significantly reduces neuropsychiatric symptoms and caregiver burden. Furthermore it increased the use of antidementia drugs compared with care as usual. The authors argue that dementia care management should be incorporated in routine care.
See for further reading: http://jamanetwork.com/journals/jamapsychiatry/article-abstract/2645498http://jamanetwork.com/journals/jamapsychiatry/article-abstract/2645498
June 2017
The paper of Van der Roest et al. 2017 has been selected as paper of the month June.
This paper is a review on electronic assistive technology (AT) devices designed to support people with dementia. Aim of the review was to assess the efficacy of AT for memory support in people with dementia in terms of daily performance of personal and instrumental activities of daily living (ADL), level of dependency, and admission to long-term care. The results showed a lack of high-quality evidence to determine whether AT is effective in supporting people with dementia to manage their memory problems.
Cochrane Database Syst Rev. 2017 Jun 11;6:CD009627. doi: 10.1002/14651858.CD009627.pub2.
Assistive technology for memory support in dementia.
Van der Roest HG1, Wenborn J, Pastink C, Dröes RM, Orrell M.
April 2017
The paper of Sampson et al. 2017, has been selected as publication of the month.
Improving the care of people with dementia in general hospitals: evaluation of a whole-system train-the-trainer model. Sampson EL, Vickerstaff V, Lietz S, Orrell M. Int Psychogeriatr. 2017 Apr;29(4):605-614. doi: 10.1017/S1041610216002222. Epub 2016 Dec 21.
This article describes a “train-the-trainer” model which was implemented across eight acute hospital trusts in London in response to concerns about the quality of care that people with dementia receive during hospital admission. 2,020 hospital staff professionals were trained and the impact of training was evaluated using mixed methods. There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person-centered tools and pathways. Staff training can be considered an important step towards improving hospital outcomes for people with dementia.
March 2017
The paper of Wilson et al. 2017, has been selected as publication of the month. The paper describes their systematic review on psychosocial interventions targeted at reducing grief symptoms among family caregivers of people with dementia. It shows how important it is to implement psychosocial interventions for caregivers when the person with dementia is still alive in order to prevent caregivers’ complicated grief. In fact, it seems that a combination of cognitive skills training and behavioral oriented interventions to improve the well-being of the carer and care recipient is effective in supporting the family caregivers once the person with dementia has passed away.
JBI Database System Rev Implement Rep. 2017 Mar;15(3):809-839. doi: 10.11124/JBISRIR-2016-003017.
Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: a systematic review. Wilson S, Toye C, Aoun S, Slatyer S, Moyle W, Beattie E.
Abstract
OBJECTIVE:
To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia.
INCLUSION CRITERIA TYPES OF PARTICIPANTS:
Family carers of older persons with dementia (>65 years).
TYPES OF INTERVENTIONS:
Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death.
COMPARISONS:
No treatment, standard care or treatment as usual, or an alternative intervention.
TYPES OF STUDIES:
Experimental and epidemiological study designs.
OUTCOMES:
Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments.
SEARCH STRATEGY:
A three-step strategy sought to identify both published and unpublished studies from 1995.
METHODOLOGICAL QUALITY:
Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI).
DATA EXTRACTION:
The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently.
DATA SYNTHESIS:
Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures.
RESULTS:
Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple post-test quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief.Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE] = -0.81, P = 0.02) and complicated grief (PE = -0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04).
CONCLUSION:
There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors.Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced.
February 2017
The paper of Toot et al. 2017, has been selected as publication of the month. The paper describes their systematic review on causes of nursing home admission of people with dementia. They focus on factors that are responsive to interventions, such as cognitive functioning, behavior and psychological problems, carer related issues, environmental factors, functional status and physical health. Based on their results especially cognitive enhancement strategies, assessment and management of behavior and psychological challenges, and carer education and support are recommended to delay nursing home placement.
See: Toot S, Swinson T, Devine M, Challis D, Orrell M. Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis. Int Psychogeriatr. 2017 Feb;29(2):195-208. doi: 10.1017/S1041610216001654. PubMed
ABSTRACT
Background:
Up to half of people with dementia in high income countries live in nursing homes and more than two-thirds of care home residents have dementia. Fewer than half of these residents report good quality of life and most older people are anxious about the prospect of moving into a nursing home. Robust evidence is needed as to the causes of admission to nursing homes, particularly where these risk factors are modifiable.
Methods:
We conducted a systematic literature search to identify controlled comparison studies in which the primary outcome was admission to nursing home of older adults with dementia. Identified studies were assessed for validity and 26 (17 cohort and 9 case-control) were included. Qualitative and quantitative analyses were conducted, including meta-analysis of 15 studies.
Results:
Poorer cognition and behavioral and psychological symptoms of dementia (BPSD) were consistently associated with an increased risk of nursing home admission and most of our meta-analyses demonstrated impairments in activities of daily living as a significant risk. The effects of community support services were unclear, with both high and low levels of service use leading to nursing home placement. There was an association between caregiver burden and risk of institutionalization, but findings with regard to caregiver depression varied, as did physical health associations, with some studies showing an increased risk of nursing home placement following hip fracture, reduced mobility, and multiple comorbidities.
Conclusion:
We recommend focusing on cognitive enhancement strategies, assessment and management of BPSD, and carer education and support to delay nursing home placement.
January 2017
A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia. Di Lorito C, Birt L, Poland F, Csipke E, Gove D, Diaz-Ponce A, Orrell M. Int J Geriatr Psychiatry. 2017 Jan;32(1):58-67. doi: 10.1002/gps.4577. Review.
Peer research, co-research, or participatory research, is an innovative form of PPI where people living with dementia undertake research activities such as data collection alongside academics. Co-research with this group of service users has been attracting scientific interest, yet it appears that due to stigmatising preconceptions, studies are still scarce. This review draws on participatory research with different populations (also included mental health, learning disabilities and geriatric populations) in order to develop a model of good practice. The EWGPWD was consulted during the review process in order to create an overview of potential benefits as well as challenges of peer research, and pragmatic considerations to be addressed. Although there is a need for more high-quality data, this paper challenges traditional views on the role of people with dementia in research, and provides a nuanced view not only the practical but also the ethical implications of this research method.
December 2016
Claudia Cooper, Rebecca Lodwick, Kate Walters, Rosalind Raine, Jill Manthorpe, Steve Iliffe, Irene Petersen; Inequalities in receipt of mental and physical healthcare in people with dementia in the UK. Age Ageing 2016 1-8. doi: 10.1093/ageing/afw208 is the article of the month (READ)
Fair access to mental an physical healthcare is of great important to people with dementia, as they have high rates of physical ill health and neuropsychiatric symptoms. This study investigated whether there are inequalities by deprivation or gender in healthcare received by people with dementia and compared health care received by people with and without dementia. It studied primary care records of 68,061 community dwelling dementia patients and 259,337 people without dementia. Compared with the control population, people with dementia had fewer primary care consultations and were less likely to have weight and blood pressure monitored annually, despite the association of dementia with vascular risk factors, frailty and malnutrition. Furthermore, women with dementia were more likely to receive psychotropic medications than men, which may negatively impact their physical health. Interventions to improve access to healthcare and reduce psychotropic use in people with dementia, especially women, could benefit people with dementia, their families and society by enabling them to live well with dementia for longer.
November 2016
The paper of Dröes et al., has been selected as publication of the month. The paper discusses the concept of social health, which acknowledges the people with dementia’s remaining capacities to fulfil potentials and obligations, to manage life and to participate in social activities. Furthermore, effective interventions in these domains are described as well as recommendations for research and practice.
Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice.
Dröes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, Roes M, Verhey F, Charras K, The Interdem Social Health Taskforce.
Aging Ment Health. 2016 Nov 21:1-14. [Epub ahead of print]
October 2016
The website committee selected the publication of Zeisel et al. as publication of the month. This article introduces the terminology “Ecopsychosocial interventions” to describe a broad range of interventions that fall into this category. It can replace the term that is now often used and that describes what it is not, namely nonpharmacological interventions. The authors urge and welcome the professional community’s adoption of the new recommended terminology as well as ongoing debate about it and study of topics included in the overall term, especially contextual issues and environmental design.
Zeisel J, Reisberg B, Whitehouse P, Woods R, Verheul A. Ecopsychosocial Interventions in Cognitive Decline and Dementia: A New Terminology and a New Paradigm. Am J Alzheimers Dis Other Demen. 2016 Sep;31(6):502-7. doi: 10.1177/1533317516650806.
ABSTRACT
Dementia is a major medical and social scourge. Neither pharmacological nor nonpharmacological interventions and treatments have received sufficient funding to be meaningful in combatting this tsunami. Because the term-“nonpharmacological”-refers to what these interventions are not, rather than what they are, nonpharmacological treatments face a special set of challenges to be recognized, accepted, funded, and implemented. In some ways, the current situation is analogous to using the term “nonhate” to mean “love.” This article presents a carefully reasoned argument for using the terminology “ecopsychosocial” to describe the full range of approaches and interventions that fall into this category. These include interventions such as educational efforts with care partners, social support programs for individuals with various levels of dementia, efforts to improve community awareness of dementia, an intergenerational school where persons with dementia teach young children, and the design of residential and community settings that improve functioning and can reduce behavioral symptoms of dementia. The proposed terminology relates to the nature of the interventions themselves, rather than their outcomes, and reflects the broadest range of interventions possible under the present rubric-nonpharmacological. The goal of this new label is to be better able to compare interventions and their outcomes and to be able to see the connections between data sets presently not seen as fitting together, thereby encouraging greater focus on developing new ecopsychosocial interventions and approaches that can improve the lives of those with dementia, their care partners, and the broader society.
September 2016
The website committee selected the publication of Stevnsborg L et al. as publication of the month. This study addresses the issue of inequalities of access to treatment and care for immigrants with dementia. A large nationwide register-based study was conducted in the elderly population with dementia in Denmark in 2012 (n = 34,877). Indeed some worrisome differences in access were found and further research on barriers to access to suitable healthcare is needed.
See: Stevnsborg L, Jensen-Dahm C, Nielsen TR, Gasse C, Waldemar G. Inequalities in Access to Treatment and Care for Patients with Dementia and Immigrant Background: A Danish Nationwide Study. J Alzheimers Dis. 2016 Sep 6;54(2):505-14. doi: 10.3233/JAD-160124. PubMed PMID: 27567820.
ABSTRACT
Background: Previous studies demonstrated lower quality diagnostic assessment of dementia in immigrant populations, but knowledge about the quality of treatment and care for dementia is still lacking.
Objective: To conduct a nationwide registry-based study to determine whether inequality exists regarding access to anti-dementia treatment and care between immigrant and Danish-born patients with dementia.
Methods: A cross-sectional register-based study was conducted in the entire elderly (60≥years) population with dementia in Denmark in 2012 (n = 34,877). The use of anti-dementia drugs and residency in a nursing home were compared among Danish-born and Western and non-Western immigrants with dementia. Logistic regression analysis was done with adjustment for age, sex, comorbidity, marital status, basis of inclusion, and time since dementia diagnosis.
Results: Immigrant background was associated with a significantly lower likelihood of receiving anti-dementia drug therapy (odds ratio (OR) [95% confidence interval (CI)]): non-Western = 0.70 [0.56-0.87]; Western = 0.74 [0.63-0.87]). No significant differences were found in type or amount of anti-dementia medication dispensed between the population groups (proxy measure for adherence). Non-Western immigrants were significantly less likely to live in a nursing home (0.52 [0.41-0.65]).
Conclusion: This nationwide registry-based study indicated a worrisome difference in access to anti-dementia treatment and care for dementia patients with an immigrant background, but similar levels of adherence compared with the Danish-born population. Further research is necessary to pinpoint barriers to access to suitable healthcare among elderly immigrants with dementia but also to identify and develop culturally sensitive methods for their treatment and care.
July - August 2016
The website committee selected the publication of Nelleke van ‘t Leven et al. as publication of the month. This study addresses the important topic of how interventions can deliver a person-centred approach. It examined how three specific multiple-component, activating dyadic interventions fitted needs, characteristics, and preferences of both the people with dementia and their informal caregivers. These interventions included the Pleasant Events Program, the Exercise and Support Intervention for People with Dementia and Their Caregivers, and Occupational Therapy. Results showed that five factors influenced the dyad’s ‘fit’ for these interventions: timing, need for activity, lifestyle, apart-or-together and meaning of (lost) activity.
See: Van’t Leven N, de Lange J, Prick AE, Pot AM . How do activating interventions fit the personal needs, characteristics and preferences of people with dementia living in the community and their informal caregivers? Dementia (London). 2016 Aug 10. pii: 1471301216662378. [Epub ahead of print]
June 2016
The publication of the month June, selected by the website committee, is Sobol et al. In this article results of a large RCT are described in which supervised aerobic exercises were compared to care as usual in community-dwelling persons with mild Alzheimer’s disease. Positive effects were shown on fitness, exercise self-efficacy, single-task physical performance and dual-task performance.
See: Sobol NA, Hoffmann K, Frederiksen KS, Vogel A, Vestergaard K, Brændgaard H, Gottrup H, Lolk A, Wermuth L, Jakobsen S, Laugesen L, Gergelyffy R, Høgh P, Bjerregaard E, Siersma V, Andersen BB, Johannsen P, Waldemar G, Hasselbalch SG, Beyer N. Effect of aerobic exercise on physical performance in patients with Alzheimer’s disease. Alzheimers Dement. 2016 Jun 23. pii: S1552-5260(15)30002-9. doi: 10.1016/j.jalz.2016.05.004. [Epub ahead of print] PubMed PMID: 27344641.
May 2016
The website committee selected the publication of Wiskerke et al. as publication of the month. The paper discusses a rather new theme: how to deal with new relationships or sexual intimacy of persons with dementia whilst still married to another person? Results of qualitative interviews with relatives and staff are discussed.
See: Wiskerke E, Manthorpe J. New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff. Dementia (London). 2016 May 6. pii: 1471301216647814. [Epub ahead of print] PubMed PMID:
27154963.
April 2016
This time the website committee selected the publication of Laakkonen et al, as publication of the month April. This is a well-designed study about effects of self-management groups for informal caregivers and for persons with dementia. It addresses the important topic of promoting empowerment and problem solving skills in dementia.
See: Laakkonen ML, Kautiainen H, Hölttä E, Savikko N, Tilvis RS, Strandberg TE, Pitkälä KH. Effects of Self-Management Groups for People with Dementia and Their Spouses-Randomized Controlled Trial. J Am Geriatr Soc. 2016 Apr;64(4):752-60.
doi: 10.1111/jgs.14055. Epub 2016 Apr 5. PubMed PMID: 27060101
March 2016
The website committee selected the publication of Lawrence V. et al. as publication of the month. A large qualitative study was conducted with focus group discussion in sixteen care homes. It stresses relevant factors to consider when trying to implement psychosocial interventions in care homes.
See: Lawrence V, Fossey J, Ballard C, Ferreira N, Murray J. Helping staff to implement psychosocial interventions in care homes: augmenting existing practices and meeting needs for support. Int J Geriatr Psychiatry. 2016 Mar;31(3):284-93.
doi: 10.1002/gps.4322. Epub 2015 Jul 20. PubMed PMID: 26192078
You can find it HERE
February 2016
The website committee selected the publication of Alieske Dam et al. as publication of the month. A thorough systematic review was performed on a relevant topic: social support interventions to improve well-being in caregivers. Multi-component interventions were most effective on caregiver social support and well-being.
See: Dam AE, de Vugt ME, Klinkenberg IP, Verhey FR, van Boxtel MP. A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise? Maturitas. 2016 Mar; 85: 117-30. doi:
10.1016/j.maturitas.2015.12.008. Epub 2016 Jan 4.
You can find it at: http://www.maturitas.org/article/S0378-5122(15)30092-X/abstract
January 2016
The website committee selected the article of Clive Ballard et al. as publication of the month.
This high-impact article describes results of a cluster-randomized factorial controlled trial in 16 U.K nursing homes showing that worsening of neuropsychiatric symptomatology after reduction of antipsychotic medication use in long-term care settings can be mitigated by concomitant delivery of an nonpharmacological intervention aimed at improving resident interactions.
See: Ballard C, Orrell M, YongZhong S, Moniz-Cook E, Stafford J, Whittaker R, Woods B, Corbett A, Garrod L, Khan Z, Woodward-Carlton B, Wenborn J, Fossey J. Impact of Antipsychotic Review and Nonpharmacological Intervention on Antipsychotic Use, Neuropsychiatric Symptoms, and Mortality in People With Dementia Living in Nursing Homes: A Factorial Cluster-Randomized Controlled Trial by the Well-Being and Health for People With Dementia (WHELD) Program. Am J Psychiatry. 2015 Nov 20:appiajp201515010130. [Epub ahead of print] PubMed PMID: 2658540
November 2015
The website committee selected the publication of Alexandra König et al. as publication of the month. The article describes an innovative way of assessing autonomy in persons with dementia by using a video event monitoring system. It was tested among 49 participants and results show that this technology may improve autonomy assessment in an unbiased way.
See: König A, Sacco G, Bensadoun G, Bremond F, David R, Verhey F, Aalten P, Robert P, Manera V. Ecological Assessment of Autonomy in Instrumental Activities of Daily Living in Dementia Patients by the Means of an Automatic Video Monitoring System. Front Aging Neurosci. 2015 Jun 9;7:110.