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


Monday 8 June 2015

Focus on carers

Today sees the start of the annual Carers Week, an important campaign to help raise the profile and needs of carers in the UK and celebrate the vital contribution they make to society. This year's theme is 'Carer Friendly Communities', which dovetails neatly with the long-standing ambition to create 'Dementia Friendly Communities'.

The idea of 'friendliness' it seems is everywhere, and carers are certainly long overdue their dose of understanding, support and recognition. However, the ambition to create ‘Carer Friendly Communities’ isn't going to be one that is easily achieved. Carers face a multitude of issues and problems, which (in no particular order), include: 

   The low level of Carer's Allowance, and fears that it could face cuts in the future (rather than being increased). Many carers are already on the breadline or in debt.

   Prejudice in the workplace. Many employees who are also carers can find it impossible to juggle employment and their caring role, and unlike the awareness of issues parents of young children face, the issues carers face when caring for adult loved ones are often poorly understood by employers.

   Lack of training. While training for our health and social care workforce may be patchy, education and training are often completely non-existent for carers of loved ones. It’s a role you often ‘fall into’ and have to learn as you go, despite some of the demanding and complex tasks many carers undertake that, in the professional workforce, it would be unthinkable not to provide training for.

   The complexity of navigating health and social care systems. This complexity can be so great that professionals in health and social care who then become unpaid carers for family members or friends often report huge difficulties with navigating the systems they work in. Against that backdrop, what hope is there for the majority of carers facing these circumstances?

I’m sure even the most ardent supporter of ‘Carer Friendly Communities’ would agree that it will be impossible for communities alone to provide solutions to these issues, but that shouldn’t detract from the laudable aims of ‘Carer Friendly Communities’, not least because I believe that collective local action can improve the lives of many people in our society, including carers.
Potentially living in a community that understands the needs of carers could help with:

   Support for carers. This could be anything from social interaction with likeminded people to help with having a break or a holiday (often carers want a holiday to be facilitated that can include their loved one).

   Greater understanding of the needs of carers and the people they care for. This could be anything from making transport more accessible to providing toilets that a carer and the person they are caring for can go into together in order to change an incontinence pad.

   A more enlightened attitude. As I explained in my G8 Dementia Summit Film, we would take my dad to coffee shops and people would often stare because we had to spoon drinks into his mouth. Educating communities about different conditions, and the ways in which families are supporting people living with those conditions, can help to remove a lot of stigma and discomfort families who are caring for a loved one with conditions like dementia feel when they go out. If we don't address these issues they can, and do, lead to unbearable levels of social isolation.

   Support for life after caring. This is a vitally important area of carer support that is largely ignored. If a person goes from being a carer for many years to no longer fulfilling that carer role, for whatever reason, that is a life-changing juncture for that individual. If the person they have cared for has died, there is also a need for specialised bereavement counselling that takes into account not just the personal relationship the two people had but the care and support relationship too.

My reservation is always around how the extra support carers need is going to be funded. We know that social care is on its knees, and although there is a huge amount of potential to turn care homes into community hubs (this could help with some of those socialising and training issues), or to utilise and develop some of the fantastic potential within the charitable and community interest sector, initiatives - however well-meaning - cannot survive on fresh air alone.

My personal view is that as a country we don't value carers enough. Time and time again the huge contribution they make to society and the immeasurable problems that would be created if every carer suddenly decided to stop caring are conveniently forgotten. We must NEVER overlook the fact that without families, friends and neighbours caring for the people they love and are close to, our health and social care systems would completely collapse. Carers prop up so many services, helping to keep loved ones out of hospital and out of care homes, but many do this as isolated, bewildered, exhausted and marginalised individuals who often fell into caring and see no ‘way out’.

In reality, most carers actually don’t want a 'way out', but they are driven to despair and hopelessness by the lack of support. It is a lack of support that shames us all. Greater support for carers would be amongst the finest investments we could ever make to our country for today, tomorrow and the future. If ‘Carer Friendly Communities’ proves to be one way to facilitate that then great, but I would also urge our politicians and policy makers to do their bit, because without their input and influence this focus on carers will just be another well-meaning exercise with no tangible inroads being made into the issues that trouble carers the most.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886