In residential aged care, how many times have you heard the howls of frustrations as management and staff, shake their fist in the air, bicker and scratch their heads to work out how to improve dementia care at the same time balance the books. It’s a constant frustration, not just for the staff but for the residents with dementia and caregivers as well as they continue to pay for care and feel that they are unheard, unseen and their needs have gone unnoticed.
Good news, the latest study was presented at the Alzheimer’s Association International Conference from the University of Exeter and carried out in collaboration with University College London, Hull, Bangor and Alzheimer’s Society UK. The study evidently highlighted the fact that activities carried out in line with the philosophy of Person-Centred Care, coupled with a week of social activities resulted in a reduced in responsive behaviours in dementia and improve the quality of life for residents with dementia in a residential care home.
The large scale study funded by the National Institute for Health Research was carried out in 69 residential care homes in the United Kingdom and consisted of 800 residents with dementia. Each of the 69 residential care home had two staff attend a four-day session, training them to socially engage with residents with dementia and finding out what residents would like in the areas of their care needs. When executed, this person-centred care approach coupled with an hour of social engagement found that not only was there a reported in the increase in quality of life but a reduction in responsive behaviours of dementia resulting in cost savings in dementia care to the organisation compared to care without such interventions.
“Taking a person-centred approach is about really getting to know the resident as an individual – knowing their interests and talking with them while you provide all aspects of care. It can make a massive difference to the person themselves and their carers. We’ve shown that this approach significantly improves lives, reduces agitation and actually saves money too. This training must now be rolled out nationwide so other people can benefit.”
-Dr Jane Fossey ( Oxford Health NHS Foundation Trust)
With the success of this study, the researchers are potentially aiming to have this intervention carried out in 28,000 residential care homes in the country, potentially positively impacting up to 300,000 residents with dementia.
As we get older we have a greater risk of developing impairments in areas of cognitive function – such as memory, reasoning and verbal ability. We also have a greater risk of dementia, which is what we call cognitive decline that interferes with daily life. The trajectory of this cognitive decline can vary considerably from one person to the next.
Despite these varying trajectories, one thing is for sure: even cognitively normal people experience pathological changes in their brain, including degeneration and atrophy, as they age. By the time a person reaches the age of 70 to 80, these changes closely resemble those seen in the brains of people with Alzheimer’s Disease.
Even so, many people are able to function normally in the presence of significant brain damage and pathology. So why do some experience symptoms of Alzheimer’s and dementia, while others remain sharp of mind?
It comes down to something called cognitive reserve. This is a concept used to explain a person’s capacity to maintain normal cognitive function in the presence of brain pathology. To put it simply, some people have better cognitive reserve than others.
Evidence shows the extent of someone’s cognitive decline doesn’t occur in line with the amount of biological damage in their brain as it ages. Rather, certain life experiences determine someone’s cognitive reserve and, therefore, their ability to avoid dementia or memory loss.
How do we know?
Being educated, having higher levels of social interaction or working in cognitively demanding occupations (managerial or professional roles, for instance) increases resilience to cognitive decline and dementia. Many studies have shown this. These studies followed people over a number of years and looked for signs of them developing cognitive decline or dementia in that period.
As we get older we have a greater risk of developing impairments in cognitive function, such as memory. from shutterstock.com
Cognitive reserve is traditionally measured and quantified based on self reports of life experience such as education level, occupational complexity and social engagement. While these measures provide an indication of reserve, they’re only of limited use if we want to identify those at risk of cognitive decline. Genetic influences obviously play a part in our brain development and will influence resilience.
Brain plasticity
The fundamental brain mechanisms that underpin cognitive reserve are still unclear.
The brain consists of complex, richly interconnected networks that are responsible for our cognitive ability. These networks have the capacity to change and adapt to task demands or brain damage. And this capacity is essential not only for normal brain function, but also for maintaining cognitive performance in later life.
This adaptation is governed by brain plasticity. This is the brain’s ability to continuously modulate its structure and function throughout life in response to different experiences. So, plasticity and flexibility in brain networks likely contribute in a major way to cognitive reserve and these processes are influenced by both genetic profiles and life experiences.
A major focus of our research is examining how brain connectivity and plasticity relate to reserve and cognitive function. We hope this will help identify a measure of reserve that reliably identifies individuals at risk of cognitive decline.
Strengthening your brain
While there is little we can do about our genetic profile, adapting our lifestyles to include certain types of behaviours offers a significant opportunity to improve our cognitive reserve.
Activities that engage your brain, such as learning a new language and completing crosswords, as well as having high levels of social interaction, increase reserve and can reduce your risk of developing dementia.
Regular physical activity also improves cognitive function and reduces the risk of dementia. Unfortunately, little evidence is available to suggest what type of physical activity, as well as intensity and amount, is required to best increase reserve and protect against cognitive impairment.
There is also mounting evidence that being sedentary for long periods of the day is bad for health. This might even undo any benefits gained from periods of physical activity. So, it is important to understand how the composition of physical activity across the day impacts brain health and reserve, and this is an aim of our work.
Our ongoing studies should contribute to the development of evidence-based guidelines that provide clear advice on physical activity patterns for optimising brain health and resilience.
The Lantern Project Australia, founded by Cherie Hugo, is about giving aged care residents the quality of life they deserve through good food and nutrition.
Dementia is a progressive disease of the brain that mainly affects older people – although is not a “normal” part of ageing. Of the 850 000 known cases of dementia in the UK, some 40,000 are aged under 65.
It is a collection of brain diseases – with Alzheimer’s the most common – and is not just about memory loss. Everyone experiences it differently, from behaviour change, to difficulty processing conversations, to confusion over everyday tasks – such as working out how to make a cup of tea.
As academics researching in this area with other organisations, we work directly alongside people living with dementia, as well as their carers, families and communities. And while we understand a lot about the disease – including how it affects a person’s health and the impact it can have on their personal lives – we do not know what it’s really like to live with dementia, day in, day out.
Gym and swim
This is why it’s critical to listen to those who can tell it as it is – which is what a large part of our research is about. Susan Small who was a dementia support worker and a carer says:
People should not be defined by their dementia, but given opportunities and experiences to enjoy life and relationships – and indeed take a few risks now again. We need to learn to listen more to what the person with dementia is telling us.
It is important for people to get a correct, early diagnosis, as long as it is followed up with timely information and support. Too little information can leave the person with dementia and those close to them, feeling ill prepared – yet too much information can leave people fearful of their future.
Being around family and friends is important. Pexels.
Barbara Dow who cared for her husband Al and is now a dementia campaigner agrees, stressing that a timely diagnosis enabled them to plan for the future together. This meant they could move house to be nearer to family and facilities where they could both continue much loved hobbies such as dancing. She said:
Al continued to lead a full life to the best of his abilities. If he could not dance, then he could go to the gym and swim.
She also speaks of humour lessening frustration and maintaining self-esteem:
Al might forget who had just spoken on the phone. We used to say it was Mr or Mrs Whatsit, have a bit of a laugh together about it and then I would dial 1471.
My life, my terms
People living with dementia – and their carers – also speak of the need to emphasise what is achieved, rather than what isn’t.
Ken Clasper, a university college engineer, was diagnosed with Lewy Body dementia at the age of 56. This is the same type of dementia that actor Robin Williams had and can cause depression, paranoia, Parkinson’s disease and confusion.
Clasper told us that although he may need more time to process information, “please don’t answer for me, just give me time”. He suggests that it’s also important for others to know the person with dementia, and for example, their life-long interests and passions. He is a keen nature lover and photographer and bought equipment that helps him to continue to take photographs.
Dementia doesn’t have to mean the end of hobbies and interests. Pexels.
Other people with dementia have spoken of enjoying being outdoors on their own, and while this may cause some understandable anxiety to friends and family, they stress the importance of being able to “get on with life in their own way” – with family and community support.
Learning to adapt
These experiences show that much of living with dementia is about cycles of loss and adjustment, of change and adaptation – and of partial resolution. Partial, because life does not stay the same – we shift and change with circumstance as a progressive disease is experienced and lived through.
As the Alzheimer’s Society’s campaign to unite against dementia succinctly portrays, how this indiscriminate disease can affect anyone.
How a person might live with dementia depends on who they are, their own individual diagnosis as well as their support network and connections. But it is important to remember that people can and do live well with dementia.
Of course, there will be peaks and troughs, good days and bad, but rather than just seeing everyone with dementia as “sufferers”, or as “brave battlers” of a debilitating disease, it is important to remember that dementia can be lived with as well. To do this, we need to listen to and learn from, those who know what it’s really like – those people who have the actual lived experience.