Wellbeing and dementia

'Wellbeing' is everywhere these days. Health and social care professionals are eulogising about it and it now has an important place in legislation, with the Care Act featuring wellbeing prominently. But what exactly is it, and how do we enable people with dementia to feel a sense of wellbeing?

The Oxford English dictionary definition of wellbeing, as stated online is:

"The state of being comfortable, healthy or happy."

While my trusted dictionary that has been with me since my early teenage years tells me wellbeing is:

"The state of being healthy, happy or prosperous."

Instantly, the concept of being healthy, whilst living with any long-term condition - be it dementia or something else (and often more than one condition at any one time) - seems a contradiction in terms. Once health has been compromised, is wellbeing merely just a tokenistic ideology?

I personally don't think so. If you subscribe, as I do, to the firmly held belief that you should always see the person before their dementia, then wellbeing is still eminently possible for anyone living with dementia. The basic definitions of wellbeing, namely being comfortable, happy and prosperous are also not precluded by dementia, although in the case of financial prosperity, it is true to say that many people living with dementia enjoy anything but a prosperous lifestyle, given the double whammy of low income and high care and support costs.

In an ideal world, happiness and comfort should be the preserve of everyone, although as we know that is often not the case. Systemic failures of health and social care systems, in-cohesive communities, isolation, lack of understanding, stigma and fear are some of the common barriers to experiencing the happiness and comfort associated with wellbeing, and although I'd be the first to admit that these issues are being addressed in some parts of the UK, we undoubtedly still have a long way to go.

Reflecting on my dad's life during his 19 years with dementia, I've often wondered about his experiences of wellbeing. Ultimately only he could define whether or not he experienced a sense, or indeed a reality of wellbeing, but as a close observer I think there were times of happiness and contentment - particularly when we were relaxing outside in the sunshine - that felt to me to be the very embodiment of wellbeing.

Comfort is more tricky to quantify, especially in dad's latter years with dementia, which are often the times it's particularly difficult to ensure a person's wellbeing. In dad's pre-diagnosis years, I would say he was fairly comfortable - living in his home, surrounded by his things and doing as he pleased has a definite element of comfort to it, albeit that has to be seen against the backdrop of his dementia symptoms, which during those years included hallucinations, paranoia, confusion and a gradual inability to look after himself (See my ‘Ten lost years’ blog post).

But in my dad's last few years, I'm less sure about how comfortable he honestly was. I wasn't sitting in his chair, wearing those incontinence pads, having to be dressed by others, being hoisted, shuffling down the seat constantly and being helped to eat. Even the best care practices in these circumstances don't necessarily always result in comfort for the person being cared for, which is partly why role-play training, where a care worker learns what it feels like to be hoisted, helped to eat and wear incontinence pads, is so effective in educating care workers about what the person they are caring for is potentially feeling.

That said, we did everything we could to make life more comfortable, by getting dad his own special chair, making sure his pads were regularly changed, buying him the nicest clothes we could find and trying to be with him for his mealtimes to ensure he had as much time as he needed to eat. We didn't really think of it in terms of trying to create a sense of wellbeing for him, but in hindsight you could easily interpret it in that way.

Now wellbeing is such a prominent theme in care and support, it's a really good prompt for thinking about how you are going to create and enhance wellbeing for a person with dementia. My general view on this is to keep it simple and never assume that just because a person's dementia has advanced that wellbeing isn't possible for them. Start with one of the key building blocks in every interaction – communication. Everything from greeting a person and introducing yourself all the way through to the person-centred approaches that are vital in dementia care. Also read my ‘Talking the talk’ blog and my blog on expression, ‘Don’t ignore me’.

Focusing on the definitions of wellbeing as mentioned earlier think about:

•   Supporting a person with dementia to find happiness in aspects of daily living - examples include: wearing a favourite outfit, enjoying some pampering during personal care, a favourite meal or drink, exploring nature, participating in a hobby, getting out and about, reminiscing, and entertainment (like books, music or films) – the only limits are the interests of the person with dementia and the imagination of the individual(s) supporting them.

•   Comfort is achievable through elements like environmental changes, personal care that is responsive to the individual’s needs, foods and drinks that tickle taste buds and satisfy, peaceful sleeping, and timely and appropriate care during periods of ill-health (for example chest and urine infections).

•   Prosperity in a financial sense is of course down to individual circumstances, but prosperity in terms of an emotionally enriching life is possible through opportunities to learn, promotion and support of individuality, kind, compassionate and dignified care, feeling loved and wanted, having hope and being respected.

In essence though, this really is just the tip of the iceberg. Wellbeing is such a huge topic, I’m sure I will return to it again in the future on D4Dementia.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Taking stock

Last weekend marked the 3^rd anniversary of my dad’s death. Alongside remembering that immensely sad day, it also prompted a lot of reflection, both personally about dad’s life and the gap he has left behind, but also more generally about how much has, or hasn’t, changed in those three years for people who are living with dementia, their families and the professionals charged with providing care and support.

My dad died just a month after David Cameron had launched the first ever ‘Prime Minister’s Challenge on Dementia’. It some ways it seemed very ironic – the country was finally waking up to dementia as dad was going to sleep for the last time. There was nothing in that Challenge that could possibly benefit dad, but I could see that it provided a focus that was badly needed for people who were newly diagnosed or who would go on to develop dementia in the future.

Since then there has been an increase in the diagnosis rate, an improvement in UK-wide awareness resulting in 1 million Dementia Friends, the creation of some ‘dementia friendly communities’, more dementia training for health and care staff, a renewed research effort, and an unprecedented global focus on dementia.

All that sounds very impressive, and undoubtedly it is an improvement on where we were 3 years ago, but I remain frustrated. Maybe I’m impatient, I know Rome wasn’t built in a day, and obviously care and support for people with dementia cannot be transformed overnight, but I remain unconvinced that everything that’s been done, great though it is, has really benefited people with dementia to the extent that the majority could say they are living well, or at least living better.

A major contributing factor to this situation are the cuts in social care, something I recently wrote about for Huffington Post. Most people who develop dementia have far more need for social care services than health services over the course of their dementia. Yes healthcare is important when diagnosing dementia, providing effective management of any long-term conditions that the person might have alongside their dementia (for example diabetes or high blood pressure), treating the common infections that people with dementia often develop as dementia progresses (urinary tract infections and pneumonias), and caring for people if they have a fall that requires hospital admission, but healthcare isn’t the bread and butter of dementia care.

Keeping people safe and well in their own homes for longer is the widely-agreed gold standard for dementia care. It’s what most people with dementia want and, frankly, are entitled to. It will always live in my memory that my dad was taken to hospital having collapsed from a larger stroke and never returned to his home. Not through his choice, or ours, but because he was deemed to have been too much of a risk to himself and others if he returned home. In hindsight, that could easily have been code for, “We don’t have any suitable accommodation that could help to keep him independent, nor can we provide the professional support he needs or support you as his family, therefore it’s just easier to keep him in hospital and then put him in a care home.”

In the 3 years since my dad died, or indeed the 12 years since he was moved into his first care home, I’m not convinced that any policy by any government of any political persuasion has actually ensured that if we lived that experience with my dad again now that the outcome would be any different. Daily life for people with dementia still, pretty much, amounts to muddling along in your own home (if you're 'allowed' to) - with some modifications if you’re fortunate enough to be helped with those, or indeed can afford them yourself – and being means tested for home care which might, in reality, amount to highly inadequate 15 minute visits that neither you as the person with dementia, or the care worker, actually feel achieve anything. The alternative is either hospital (free care) or a care home (means tested).

We know that people with dementia are ending up in our overcrowded A&E departments far too often, mostly because they haven’t been getting the social care that they need, and then proceeding to languish in hospital beds for far longer than they should be (much like my dad did, with one 3-month spell in hospital seeing him lose half his body weight as he was drugged with antipsychotics) all because of endless assessments and wrangles over funding.

We also know that GP’s are under pressure to diagnose increasing numbers of people with dementia, often referring them into memory clinics with long waiting lists. There is precious little support for people who are newly diagnosed, with too few specialist dementia nurses and then, of course, there are families, many of whom want to support their loved ones but are given scant help with this and a paltry carers allowance to live on.

Meanwhile, I’m not convinced the Care Act, that great bastion of apparent overhaul in caring for and supporting people, will provide much tangible assistance. Yes, there are entitlements to assessments, Councils have to help families by providing information, and next year sees the cap on care costs come into force, but for many families this means-tested social care system will still leave them with complex financial issues to overcome.

Add all this up and it amounts to a not particularly impressive stock take. I still don’t think most people with dementia feel listened to, nor do their families. A lot of what’s been achieved, it could be argued, is fancy window dressing – things that look good and are relatively easy to succeed with, whilst side-lining the really big issues about how we provide holistic, person-centred support for each individual living with dementia, preserve their independence for the longest possible time, give carers and families the help they require to continue to care and not breakdown, and properly provide and fund the social care people with dementia need.

I hope that dementia remains a priority for the next government, but even more than that, I hope politicians start to get to grips with the issues that are REALLY challenging for people with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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