As the number of people over 65 in Wales grows faster than anywhere else in the UK, research is rising to the challenge of helping ensure good physical, mental and social wellbeing into retirement and beyond.
Dementia is a key threat to that wellbeing, with over 42,000 people in Wales affected by this debilitating disease, with no prospect of cure and limited tools for slowing its relentless erosion of their independence and identity.
As the NHS turns 70, we take a closer look at the current challenges faced by dementia research, and then how Wales’ ground-breaking research is developing unexpected methods for slowing dementia progression and improving quality of life, from constructive coffee clubs and artistic pursuits to mixing with toddlers.
‘The most feared health condition’
A recent Welsh Government publication estimates that one in 14 people over the age of 65 have a form of dementia in Wales, and as diagnoses become more accurate, this figure is set to rise in coming years.
“Dementia, now the most feared health condition amongst middle-aged people, is the main factor behind the challenge of the increasing number of older people to health and social care services,” explains Bob Woods, emeritus professor of clinical psychology of older people.
The commonest forms of dementia, Alzheimer’s disease and vascular dementia, see areas of the brain die, breaking connections and damaging the brain’s capacity to respond. This causes disruption of memory, communication and thinking, and even tasks done with ease since childhood, such as handling money or dressing oneself.
Taking a positive, person centred approach
With the numbers of those affected rising year on year and medical treatments proving elusive so far, dementia management and maintaining good quality of life have become key areas of research.
“Positive, person-centred approaches may not be a cure for dementia, but they can have valuable effects on wellbeing and on relationships,” Bob Woods explains.
This pioneering research, looking beyond the medicine cabinet, faces multiple challenges - not least in who is involved, and the experiences that have shaped them.
“One of the interesting aspects of carrying out research on ageing is of course that we always have a moving target” says Bob Woods.
“People in their 80’s today are very different from those in their 80s 20 years ago, and those of us who will be in our 80’s in 20 years’ time will have had very different life experiences and expectations from the current older generation,” he adds.
Coffee, cake and communications confidence
That shifting picture of what old age is is clear from the fact that many dementia carers are the children of those affected, themselves often considered to be in “old age” by the time their parent becomes ill.
The Wales School for Social Care Research is playing a pivotal role in a dementia research study titled “The Me, Myself and I Club”. Stemming from research evidence of the importance of short breaks for carers of people living with dementia from their responsibilities, without the stress of separation from their loved one.
The club offers carers and people with dementia the opportunity to meet up with other local people in their position, enjoy activities like bingo, baking and table tennis.
Supported by volunteers and gaining vital peer support, members can take on leadership roles within the group, often building their confidence and sense of purpose.
The groups also allow those living with the disease to feedback to local services about what could be improved in their community care.
Users of the club have found it profoundly helpful. “I love this club as all my friends are here. I feel part of something special and it has given me a confidence I haven’t had for a very long time. I greet new guests into the club and tell them don’t worry you will enjoy it here as we are all friends.” Explains one participant.
Now part of the Dementia and Engagement Empowerment Project (DEEP), a UK network of groups for people with dementia, it continues to research how providing a safe space for socialising and support impacts those who can often feel very isolated in their communities.
Toddlers tackling trepidation
Some research has captured the imagination of the media, with the remarkable approach of involving nursery children in dementia care the subject of a BBC documentary.
‘The Toddlers who Took on Dementia’ looked at work engaging nursery children with people living with dementia in activities like cake-making, singing and exercise.
Psychologists from Bangor University including Professor Woods, working with Centre for Ageing and Dementia Research, worked closely with the BBC team to showcase their work in a Colwyn Bay day-care centre.
Users of the centre spend three days with the young children on the planned activities to assess the impact on their memory loss, testing whether interacting with the children would tap into the passions of their younger years and revive memories.
“What we want to do is to change the environment, so that they can engage and interact without failure. And in that way we can draw on the rich vein of expertise and experience and knowledge that’s still there,” Professor Woods explains.
The advantages of arts activities
Escaping the fear and stigma of dementia’s daily effects through art was the focus of a recent study by Dr Gill Windle, senior research fellow at the Centre for Ageing and Dementia Research (CADR).
That study looked at the impact of visual arts programmes on the communication and wellbeing of people living with dementia, when included as part of their care.
It found significant evidence suggesting that arts activities, where people could experience creative and engaging activities without fear of stigmatisation, increased their wellbeing and helped them feel more socially included and valued.
The conclusion states “dementia is so often the focus of a medical model of deficit, and societal representations of dementia are predominated by fear of what will be lost”, highlighting once more the importance of considering unobvious methods of care for dementia in the future.
Although dementia still remains a life-changing disease, ground-breaking work is taking place every day in Wales to make progress towards a world where it has less of a negative impact on the person living with it and their families.
And in spite of the challenges faced by tacking such a complex and frightening disease, thinking outside of the box when it comes to dementia care has provided some of the most promising results yet. When it comes to improving quality of life, indicating that innovation and creativity in care research in the next 70 years could bring even more important developments.
Read more about the Me, Myself and I project here.
Read more about Dementia and Imagination research here