We are pleased to publish the following article written by DAI member Emily Tan Tan Ong on Dementia and Rehabilitation, or rather, the lack of rehabilitation for people with dementia.
Emily mentions in her article that rehabilitation for dementia is not heard of in her country; most other DAI members also report it is unheard of in their countries.
As our CEO Kate Swaffer says: "If we are afforded rehabilitation after a stroke or other brain injury or medical condition, then we have the same right to be after a diagnosis of dementia. It won't be a cure, and may not even slow the progression, but rehabilition does improve quality of life."
I keep the patients alive. Rehabilitation gives them Quality of Life.
(Dr. Tagio Tumas, Ministry of Health, WHO Rehabilitation 2030 Forum, Geneva, July 2019).
Dementia and Rehabilitation, by Emily Tan Tan Ong
With no means to significantly modify the progression of dementia and no cure in the foreseeable future, the rehabilitation approach is an integral part of living positively with dementia.
Rehabilitation, in its essence, is a set of interventions needed when a person is experiencing limitations in everyday physical, mental, and social functioning due to aging or a health condition, including chronic diseases or disorders, injuries, or trauma .
Despite this, rehabilitation has not been prioritized and is under-resourced globally.
A possible explanation could be rehabilitation is often perceived as an expensive and specialized service provided at the secondary care level and needed by those recovering from injury or stroke. Hence, the perception that rehabilitation is a luxury health service in addition to primary health care has caused it to be undervalued and ignored when competing demands for resources and investments.
As a result, people living with terminal, progressive health conditions like dementia, which require long-term rehabilitation services, are left behind when rehabilitation is not part of or accessible at the primary health care level.
Earlier on in my journey living with dementia, I was having difficulties with some of the everyday functioning. I was confused at the public transport interchange, overwhelmed with sequential tasks like cooking and baking, and not able to remember the content of the paragraph I just read.
It is like saying, "Sorry too bad you are diagnosed with dementia but there is nothing we can help you to continue living other than attending Adult Day Care Center or Memories Cafe. One is told that is the way life is going to be, living with dementia, losing one's functional and cognitive abilities, and independence.
Hence, it is not surprising many newly diagnosed with young-onset dementia go into depression. It is emotionally tormenting to be alive and not able to do things when you still have insights into who you are, what you value, and how you want to live despite dementia.
Rehabilitation in dementia is unheard of in this part of the world where I live.
The" ESTEEM" cognitive rehabilitation program, a partnership between the National Neuro Institute and the Singapore Alzheimer Disease Association is available to individuals diagnosed with moderate young-onset dementia. Hence, I was left unsupported to cope with my cognitive impairment when Cognitive Rehabilitation (CR) interventions would have helped to ease in transitioning my life to the 'new normal' with dementia in a more positive and encouraging light.
I came across the GREAT Cognitive Rehabilitation project of Professor Linda Clare from the University of Exeter when looking for ways to self-help myself.
The program uses a goal-oriented approach to enable people living with mild to moderate dementia to "function optimally in the context of their intrinsic capacity and current health state" [3].
However, the GREAT project is delivered by trained therapists who then work together with each individual to formulate meaningful and intrinsically motivated goals that are realistic and potentially achievable. The drawback is that not everyone can access trained cognitive rehabilitation therapists.
The training materials available are for therapists specializing in cognitive rehabilitation. The content was wordy and conceptual, but I am determined to translate whatever information I could obtain into a self-help Cognitive Rehabilitation strategy. I took ages to read, comprehend the principles, and come out with ways to maintain or regain, or in some cases, compensate for my declining functional ability. It was the best thing I have done to sustain my independence and continue living the life I want. Three years down the road with dementia, I still cook, bake, and enjoy reading. I found that the Cognitive Rehabilitation strategies have enabled me to become stronger in areas I didn't even consider would be possible. I learned to make bread at home, I regained my ability to use a laptop, and more apt at making Powerpoint slides. The best of all, I conquered my inadequacy and incompetency in writing. I now love to write for my blog.
I want to appeal to policymakers to acknowledge the rights of people living with dementia to rehabilitation services and make it part of the primary healthcare system. It is without a doubt that creating an accessible, dementia-friendly neighborhood help to remove external barriers to participation it is even more crucial to enable people living with dementia to participate in everyday life in a manner that is meaningful and purposeful to them. In this way, it also helps to dispel the public perception of incapacity in dementia.
References:
[1] Cieza A. Rehabilitation the health strategy of the 21st century. Arch Phys Med Rehabil. 2019; 100: 2212-2214
[2] Cieza A. et al.. Global estimates of the need for rehabilitation based on the Global Burden of Disease Study 2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020; 396: 2006-2017
[3] Clare L (2017) Rehabilitation for people living with dementia: A practical framework of positive support. PLoS Med 14(3): e1002245. https://doi.org/10.1371/journal.pmed.1002245
Ps. Don't forget to register for our next "Meeting Of The Minds" Webinar, Disrupted! Resiliently Reintegrating After Stress & Adversity by Dr Kozhi Sidney Makai.
Assoc. Professor James McLoughlin presents here on rehabilitation and dementia at a DAI Webinar hosted in 2016. It is still a hard sell!