Monday 22 June 2015

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...
Beth x

You can follow me on Twitter: @bethyb1886


1 comment:

  1. Hi Beth,
    We had 10,000 individuals visit our stand at the Ideal Home Show in March of this year, many who made comments about their experience with Dementia and all of whom I am confident would endorse all that you say about Wellbeing. You ask “Once health has been compromised, is wellbeing merely just a tokenistic ideology?” This should never ever be the case but based on the questions and comments we were being asked it would appear that in the phase between “normality” and “diagnosis” of Dementia this, sadly, is frequently the situation. I am attending a meeting tomorrow at which I have asked the following to be addressed; “Given the recent Care Act and its inherent drive to Personalisation, yet the reduced amount of per capita funding at the level of the service user, I am keen to ascertain how the needs of the individual can be met if they do not end up buying their solutions themselves?” Maybe some of the answers to this question will address whether we are dealing with just a tokenistic ideology.
    Clive Noak,,