Good to talk?

Having had 19 years of first-hand experience with dementia, I always find it very interesting listening to other people talking about it. By far the most powerful accounts are, for me, those that come from people who are living with dementia, those who are looking after them, and carers whose dementia journey with their loved one has come to an end.

Perhaps that is because of my background and close personal involvement in caring for my father, or maybe it is because there isn’t a theory, concept, project, service, product or sound bite that sums up dementia, explains it, makes it real and shows us a way forward like listening to people who actually know what living with dementia REALLY means. Tales of day-to-day struggles coupled with humour, honesty and warmth are, in my opinion, the greatest education tool for anyone working in dementia care who lacks their own personal family experience of this disease.

I will never look at dementia from a ‘professionals’ point of view. I am not medically qualified, I am not an academic, and incidentally I am not seeking to become either (probably a little too long in the tooth now anyway!). In that regard I suspect that I was in the minority at the 7th UK Dementia Congress, but then again I was also in the advantageous position of listening to people who are living with dementia talk and seeing so much of my dad in them from his earlier years with this disease.

Back then no one really spoke about dementia – now everyone is talking about it. The awareness is fantastic but I do not want dementia to just be another trendy bandwagon to jump on, or for real progress in care to be drowned in jargon, with business people trying to out-do each other for the latest, greatest idea. If there is one piece of advice I have for anyone in dementia care, it is that in my experiences with my father and many others the best aspects of good care are also the simplest.

That does not mean, however, that we cannot embrace new ideas. For me, two of the most enjoyable presentations I saw were from professionals who had come from overseas to explain how they are enhancing the lives of people with dementia. Randy Lee Griffin from the United States spoke about a program to bring the joy of birds, bird-watching and nature to people with dementia – a brilliant idea that reminded me of my father’s love of the great outdoors, how much he enjoyed watching and hearing birds whilst outside, the CD of birdsong that he had in his room, and a life-like soft toy cockerel that his hands spent many hours examining.

Yolanda Brand from South Africa detailed how her care home have enabled residents to keep in touch with their loved ones via social networking – a fantastic idea, not designed to in any way replace visiting or personal interaction, but to enhance communication when families are far away. To me it spoke volumes about the importance of families in dementia care, something that I feel needs to be emphasised far more than it is. It is vital to not only acknowledge and support those who are caring for a loved one with dementia and the many family members who are touched by this disease, but to tap into the unique knowledge base that they offer to professionals and policy makers (something that I wrote about in this post on good dementia policy).

For anyone reading this wondering if all the talking really changes anything, I would say that no matter how good talking is, action is what really matters. Many people are striving to do excellent work and my many colleagues within Dementia Challengers (#dementiachallengers) are testimony to that, but my thoughts during the Congress were predominantly focused on the people who were not there. Those whose dementia meant that they could not attend, those who were caring for someone with dementia whilst we were all talking and listening, those who were hearing a dementia diagnosis from their doctor, and those who were mourning the passing of a loved one as their dementia journey ended. They are and should always be the focus of everything anyone does in dementia care.

Should you need inspiration to keep that focus, I hope my last tale from the Congress will provide it. I was in the reception hall having just arrived when I met, via the person I had travelled with, one of the speakers that day. Introduced to me as Trevor, he greeted me warmly, shook my hand and kissed me on both cheeks. We exchanged a few words and then he left. When I met him I thought he was one of the many professional speakers at the event. I only discovered later, as he took to the main stage, that he was living with dementia.  A moment to reflect, perhaps, on who the real experts are.

Until next time...

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The sun is out!

Dad and I enjoying the sunshine

There were many occasions during my father’s nine years in three different care homes when I honestly wondered if having dementia was a byword for keeping people in captivity. Day after day, week after week, residents were kept cooped up indoors, which during most of the year was relatively understandable due to the English weather, but on hot summer days people would still be sat inside, in their bedrooms or the lounges, sometimes not even with a window open, eating in stuffy conditions where food can begin to smell very unappetising, watching mindless television, consigned to a life most criminals do not endure.

It strikes me, writing this on a beautiful hot, cloudless English summer day, how torturous it must be to be kept inside, tempted by that blue sky and sunshine, feeling the heat, and being without anyone in the world to help you go and make the most of it. Everyone in those homes was retirement age, a supposedly golden time in your life of relaxation and enjoyment. You do not have to be stuck in an office, factory, shop or restaurant earning your living, you have done your work, now is your time to sit back and soak up the good things in life - why should having dementia change that?

For me that is the key point – dementia is perceived to change everything, and yet the disease is not who the person is, and unless as a result of their dementia the person has developed a phobia of going outdoors, scared perhaps of the uncertainty, unfamiliarity or perceived vastness of it, or has another medical condition that requires them to remain indoors, then there is no reason to keep them inside during perfect summer weather.

Sadly there were so many days, identical to today, where we would be the only family sitting outside with our relative. Carers were generally too busy, too short-staffed or lacking in the confidence needed to utilise the lovely garden, and successfully negotiate any health and safety challenges that might come from bringing residents outside. Even more disappointingly most relatives demonstrated a similar reluctance, even though they saw how much dad enjoyed his long hours of fresh air, sunshine, alfresco dining and napping under his panama hat.

Whilst familiarity and security in their environment is very important for people with dementia, stimulation and reminiscence are too. Most people will have enjoyed outdoor life when they were younger, and those with dementia may have particularly strong memories of summer days free and happy in the sunshine. If someone has led any sort of outdoor life in the past, and shows a willingness or interest in being outside, especially in such glorious weather, denying them that is akin to keeping them a prisoner in a life that they have not chosen and do not deserve.

There was a lady at one of my dad’s homes whose family openly admitted that she had loved the outdoors her whole life, sitting out in all weathers, tending her garden, eating  all her meals outside and having family BBQ’s. They said she would have felt like a ‘caged bird’ to be kept inside, and on the occasions when she was brought out into the garden, listening to her talking about the birds and flowers while lapping up the sunshine made it very clear just how much she loved it. Yet because she could not ask to go outside, both the carers and even her family very rarely took her into the garden. Her dementia effectively consigned her to being a spectator on a life that she must have been longing for but no longer had.

Providing people are well cared for and supervised outside (as they should be wherever they are), it is the most wonderful place to be for the fresh air and sunshine (a lot of people, especially the elderly, are deficient in vitamin D for example), and also for the emotional wellbeing provided by the natural stimulation of birds, plants and wildlife. Many care homes have sensory gardens (that I wrote about here) where scented, tactile plants are growing, and water features provide visual delight and also much needed serenity, calmness and tranquillity.

Another key benefit, and one that is often completely overlooked, is the advantages to eating outside. Fresh air, and even some mild exercise if appropriate, can stimulate appetite. Poor eating and drinking can often be a problem as dementia progresses, but appetising food served outside can help to remedy this. BBQ’s, done safely, can provide wonderful aromas to tempt an otherwise flagging appetite, and even having afternoon tea parties outside can revitalise jaded routines.

Good weather, of which we get precious little in the UK, generally puts most people in a better frame of mind, and this is no different for those who are living with dementia. Not only does their health and wellbeing benefit from some consensual outdoor activities, families and carers can have immense enjoyment from helping to facilitate this. Some of our most special memories, and photos, of my dad during his dementia come from our many hours sat outside with him. These were positive, happy times when the simple beauty of nature could make dad’s dementia an almost distant memory. Nothing really beats exploring the great outdoors with your relative, and if they love it as much as my dad did, you will be so glad that you had that experience together.

Until next time...

You can follow me on Twitter: @bethyb1886

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