As we approach Easter, a time associated with rebirth, new life, possibility and opportunity, I have found myself thinking about how this correlates with the experience of living with dementia. Historically, a diagnosis of dementia has been seen as a death sentence to endure and suffer, but since that doesn’t tally with how I look back on the years I had with my dad during his dementia, I have become increasingly interested in the concept of reablement.
Reablement is generally associated with helping a person to regain the ability to look after themselves following an illness or injury. You are most likely to see services dedicated to reablement for people who are recovering from trauma (I distinctly remember the wonderfully holistic package of reablement given to my half-brother after he had a road traffic accident), or a stroke, and possibly even for people who are recovering from mental illness or addiction.
I would frame reablement as help to complete essential tasks of daily living, support to pursue hobbies and interests that are mentally and/or physically challenging, and opportunities to grow and develop. For my half-brother, I recall a residential reablement centre he went to after being discharged from hospital where he was supported to look after himself (cooking, laundry, personal care etc), return to participating in the things he enjoyed prior to his accident (hobbies and activities that were important to him), learn new skills, and plan for the future to help him prepare for living independently, getting out and about and returning to employment. He received physiotherapy, occupational therapy, counselling and there were wider family support services.
All of which begs the question, why aren’t the principles of reablement more closely associated with dementia? To put it bluntly, since dementia is a terminal disease, I suspect people with dementia are seen as being unlikely to benefit from a service that supports and encourages independence and autonomy, when traditionally dementia is associated with a degeneration into complete dependence and a loss of voice and identity.
Obviously I’m not questioning the terminal nature of dementia; my dad had vascular dementia on his death certificate. Nor am I suggesting that as dementia progresses a person doesn’t become more dependent – I know from my dad’s experience that he became totally dependent on 24/7 care, hence why he was in a specialist dementia nursing home for over 8 years.
But behind all of this there are some key variables:
- There is no set pathway for deterioration, everyone experiences this differently and in different time scales. I don’t really support the categorisations of early, middle and late stage dementia – to me these junctures are too specific and not reflective of the fluctuations in the day-to-day life of a person with dementia. Surely aiming to help a person to have the highest level of functioning for as long as possible can only be a good thing?
- No matter how advanced a person’s dementia is, there are opportunities for participation in everyday life, it’s just that we often don’t see these or have time to help them happen. Key examples from my personal experiences are my dad occasionally wanting to take the spoon and feed himself his pureed meal in the last year of his life, or finishing a song in perfect time to the music when he otherwise had virtually no speech. These achievements came about through perseverance, patience and offering encouragement.
- We are never going to know what people with dementia are truly capable of if we don’t actually put in the services, like we have for people who experience trauma or stroke, to actually see what is possible. How do we know reablement services aren’t just as effective as any of the drugs we currently have , or might have in the future, to treat symptoms or slow down the progression of dementia? Admittedly there have been a few areas of the UK offering reablement to people with dementia, but it certainly isn’t a mainstream service.
Sadly my dad never really experienced any form of official reablement. At the point he was diagnosed with vascular dementia, following ten years of mini strokes and then one much larger stroke, his quality of life and abilities had deteriorated very rapidly. As a family we had been trying to support him but we really didn’t understand what was happening to him, and the health and social care professionals in his life hadn’t been proactive enough to grasp the bull by the horns, diagnose, explain and, crucially, offer dad and us the support we needed.
Enabling dad to have maximum independence, occupation and enjoyment in life was pretty much impossible once he was confined to hospital and then moved into the first of the three care homes he would go on to spend the last nine years of his life in. We had some small victories over the years, largely stumbled upon through pure chance – examples include discovering the power of music therapy, the joy of food and eating and the wonderment of connecting with the natural world – but nothing that really fits how I would interpret reablement if I had the chance to live those 19 years of my dad’s dementia with him again.
My top tips for reablement success for a person with dementia would be:
- Offer reablement in the person’s own home – the type of residential centre my half-brother went to isn’t going to be the right model for the majority of people with dementia given the confusion and anxiety a new environment could cause. Equally hospitals, however dementia-friendly they are (and the one my dad was in really wasn’t), don’t offer the familiarity, calmness, opportunities for exploration and expression or the personal touch of home.
- Involve a multidisciplinary team of professionals, most notably people who are from the allied health professions, all of whom should be specifically trained in dementia and all of whom should take their lead from the person with dementia. Remember, professionals can learn from the person as well as imparting their own knowledge.
- Think out of the box. Is there technology that can help? What about the latest guidance on dementia friendly environments, has this been translated to the person’s home? Away from health/social care, are there individuals within the local community who can provide pastoral or occupational support, visiting or enabling the person to get out and about to enjoy hobbies/activities? Going further, can the person be enabled to get involved in community work/volunteering/awareness raising/public speaking etc – there are some fantastic peer support and mentoring services than can encourage such activity for people who feel it is right for them.
- Belief in the possibilities of reablement both for the person with dementia and those who are supporting them – be they family members, friends, neighbours or health and social care professionals – is vital. This means moving away from the historical or traditional views of dementia and seeing the exciting possibilities of reablement and how it feeds into living well.
Alongside these tips, do take a look at this page on the SCIE website: http://www.scie.org.uk/publications/guides/guide49/dementia.asp
Interestingly from the perspective of the timely diagnosis agenda, reablement fits perfectly with the idea of catching symptoms early and maximising the person’s potential. Currently diagnosis is often just a label and a prescription – reablement offers something more tangible, providing strategies and opportunities to grow into that diagnosis and live well with it. It should be at the heart of good post-diagnostic support, and if it were, those of us who are doubtful of the merits of diagnosing earlier and earlier might see more justification for it if an accurate diagnosis can be made.
Reablement isn’t about giving people with dementia or their families false hope or denying the reality that dementia is still a terminal disease. What reablement offers is the chance to make the best of what we have and do something practical to underpin the message of living well with dementia. Without reablement, I think that there is a very real risk that we give up on people with dementia far too easily.