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.
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.
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.
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.
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.
This beautiful and informative video presents 16 mental conditions in the simplest means possible. Everything from Anxiety to Narcolepsy. This video is not only well crafted but in-depth in the rep[resentation of each condition. If your brain or your mind was a house, a built environment, a piece of architecture. A bit more than a minute and a half, this display of form and functionality at its best to help people better understand, distinguish and discuss mental health through visual art.
Why we need to open our hearts & listen to the people we care for
I wanted to share this beautiful video of Raelene and Soo Ren, who opened their hearts poured out their life story in this short 11-minute film. Raelene touches on the challenges in their life of being an inter-racial couple in the UK, their life settling down in Singapore in a house with 30 members of the family and later as a caregiver for her husband who is living with cognitive impairment. No matter the challenges both Raelene and Soo Ren continue to move forward in life, sharing every day together.
I also apologise for not blogging as much and not having any new articles of late. I’m currently 29 weeks pregnant and soon to start a new chapter our lives with a baby boy. In a way, Raelene and Soo Ren’s story strikes a deep chord in my heart because much like them, me and my husband are an interracial couple as well, with me being an Asian and my Husband being a Caucasian. We do face similar stigmas but possibly not those as aggressive as what Raelene and Soo Ren had experienced in the 60s and 70s. I do ponder the needs and the types of assistance that an interracial couple may require in the areas of dementia care, be it bilingual literature on dementia, or even training especially for expatriates and immigrants, hearing their stories. Most of us will become aware of the cultural differences that both will have to overcome to be together and as cognitive impairment and dementia sets in, can we say that we can we deliver care services that can meet the needs of interracial couples? Is there more that we can do?
On top of the discussions on inter-racial couples, it is also important to recognise that everyone, everyone that you see has a story. As a nurse and a personal care assistant, I have heard of stories of women who worked in the times of war in the UK, wearing their hair in “victory rolls” and working on machines, the life of a submariner and the experiences of a WW2 Vet. There was a lady who took 7 months to sail from Australia to the UK, which to me was an incredible feat in itself. A man who knew more about the history of Singapore than I did, having visited Singapore in the 70s and 80s. A lady who thought me that when it comes to fashion quality far surpasses quantity, pulling out a teal dress she bought 20 years ago for a wedding that continued to look stunning on her at 80. A teacher who taught me all about baking and I’ll never forget five women who agreed in unison that a home cooked meal was the heart and gut of marriage. They opened their heart, they brought me smiles and laughter, sharing with me their adventures, their lives and their memories. I’m here to provide care, and yet it feels like they are providing me with the knowledge and care that I need to mature and grow, learning from their experiences and their stories, nourishing my mind and my soul, an experience that no money can ever buy.