The key to a better life with dementia

What if we hold the key to a better life with dementia, but we don’t use it?

It is my believe that we need to focus on increasing the self-confidence of our healthcare professionals to make all the difference for people with dementia and their loved ones.

But first a little backstory how I got to this point.

We read it everywhere: 1 in 5 people get dementia over the course of their lives and even 1 in every 3 women. At my home we are with 3 women now, I have daughter of 2,5 years old and a newborn daughter of 3 months, so statistics like that certainly get to me. We cannot cure dementia yet, but we can ensure the best possible life for everyone who lives with dementia.

How can we do that? We need to not only look at the person with dementia, but certainly also at his or her environment. Dementia is something you don’t experience by yourself, informal carers like spouses or other family members are 100% committed to their loved ones and they provide most of the care. That unfortunately comes with a price; too may informal carers are overburdened and this number is higher than ever during the current COVID-19 global pandemic.

Fortunately, there are many great interventions to support these important people remotely, and they also show that they are doing what they promise.

An example is the online Partner in Balance course that I developed together with informal carers and professionals. Partner in Balance increases self-confidence. Informal carers experience more control and this has a positive effect on their quality of life [1]. That is also picked up abroad, because Partner in Balance is now even being rolled out in the UK [2].

Good news. But what do we see, only 3% (!) of effective support options such as Partner in Balance are used in practice [3].

Surely we cannot accept that we have fantastic opportunities to support our informal caregivers, but that they do not end up with the people they are intended for? How do you make sure that the right care ends up with the right person, thát is my personal mission.

In recent years I have worked hard on this mission by raising awareness through lectures and YouTube series, working together with municipalities on Dementia friendly societies, organizing fundraisings, all the while talking to many caregivers and professionals about the key to crack this code. I have learned that 3 aspects are crucial to ensure that the right care reaches the right person:

  1. Develop care together with the people for whom it is intended
  2. Support the care providers in their new task
  3. Allow care to adapt to the changing needs throughout the process

For Partner in Balance, the first and last aspect are met; the course has been developed with the target audience and meets the changing needs, bút the providers seem uncertain to use it.

Why is that? An inventory among already trained Partner in Balance coaches shows that there are a number of barriers they encounter:

  1. They do not have confidence in their online knowledge and skills and therefore do not offer it to clients
  2. They lack confidence in being able to use a new approach in practice (the self-management principle)
  3. Knowledge “fades away”. They are enthusiastic about the training, but when you get back to their daily routine, the new knowledge disappears and along with it the trust that they can use it effectively.

I would really like to overcome these barriers so that Partner in Balance can be used by all professionals becomes is accessible to all informal carers.

Recently I was nominated for the Young Outstanding Researcher Award from Alzheimer Nederland, a talent prize (€100.000) for the most promising young researcher in the field of dementia. With my nomination I’m one step closer to making this dream come true. If the public votes for me, I want to commit myself to increasing the self-confidence of professionals by, e.g. expanding the coach training, setting up intervision opportunities, newsletters and webinars and building a coach community for coaches to support each other.

In addition to increasing the self-confidence of healthcare professionals, I also aim to further expand the Partner in Balance content so that it adapts to the new phases and new challenges caregivers face throughout the process.

My mission is a future in which informal carers in all circumstances and throughout the entire care process receive the key to the right support at the right time by well-trained professionals. I am convinced that I can make a difference in the quality of life of people with dementia and their carers. For this generation, but also for the next. Please help me make this dream come true and vote for me via https://nl.surveymonkey.com/r/D7G6J52

 

Thank you so much for your support! You can follow my journey via LinkedIn: https://www.linkedin.com/in/lizzy-boots-67790437/

For more information about the Young Outstanding Researcher Award, visit: https://www.alzheimer-nederland.nl/talentprijs

 

Dr. Lizzy Boots

Coordinator psychosocial interventions

Alzheimer Centre Limburg | Maastricht University

 

References

  1. Boots LM, de Vugt ME, Kempen GI, Verhey FR. Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial. J Med Internet Res. 2018;20(7):e10017.
  2. UEA, Anglia UoE. £2 MILLION PROJECT TO SUPPORT UK DEMENTIA CARERS2020. Available from: https://www.uea.ac.uk/news/-/article/2-million-project-to-support-uk-dementia-carers.
  3. Gitlin LN, Marx K, Stanley IH, Hodgson N. Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps. Gerontologist. 2015;55(2):210-26.