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 (email@example.com).
Website committee members cannot vote for an article they co-authored.
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
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.
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.
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.
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.
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.
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.
“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/
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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/
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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
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
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.
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’.
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.
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
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]
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.
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.
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.
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
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.
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.
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
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:
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
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.
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.
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.
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.
No treatment, standard care or treatment as usual, or an alternative intervention.
TYPES OF STUDIES:
Experimental and epidemiological study designs.
Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments.
A three-step strategy sought to identify both published and unpublished studies from 1995.
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).
The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently.
Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures.
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).
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.
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
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.
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.
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.
We recommend focusing on cognitive enhancement strategies, assessment and management of BPSD, and carer education and support to delay nursing home placement.
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.
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.
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]
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.
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.
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.
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]
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.
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:
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
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
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
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
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.