When Memories Fly Away

20th July 2018

In the UK, one person develops dementia every three minutes. It’s the biggest health crisis facing society right now and almost everyone knows someone who has been affected. Despite that, public understanding remains flawed and fearful. The Dementia Friends initiative, set up by the Alzheimer’s Society, is designed to deconstruct the myths and help attendees understand what it’s like to live with dementia. Jill Glenn went along to a session.

Professor Tom Kitwood, a pioneer in the field of dementia care during the 1980s and 90s, coined the phrase ‘When you’ve met one person with dementia… you’ve met one person with dementia’. It may have a certain glibness about it, but it makes a very valid point. Dementia affects everyone differently, with symptoms that include loss of memory, changes in behaviour and mood, and problems with communication and reasoning skills.

Dementia, which currently affects more than 800,000 people in the UK (a number expected to rise to a million by 2021) is, in fact, not a single condition. It’s an umbrella term that covers around a hundred different types of progressive cognitive decline, of which Alzheimer’s disease and vascular dementia are the best known. It describes the symptoms that occur when the brain is affected by certain diseases or conditions which cause the gradual death of brain cells. The key word is ‘progressive’. How fast cognitive decline progresses will vary from person to person and is, of course, linked to the type of dementia they have.

Despite the importance of understanding and honouring the individuality of each dementia-affected life, there are certain characteristics to the condition(s) that have, in an Alzheimer’s Society project, been brought together in a package of information designed to increase public understanding and response. Dementia Friends learn a little bit more about what it’s like to live with dementia and then can turn that understanding into action. Anyone of any age can be a Dementia Friend; sessions, which last about an hour, take place regularly at different locations throughout the community nationwide, or can be requested by companies or organisations to take place in-house.

I’m privileged to be participating in a session held for department heads at Elton House, a new care home in Bushey that will include 24 specialist dementia suites in addition to its 71 regular private apartments. The aim is to have all staff – whatever their role within the structure – dementia-trained.

We begin by talking about phraseology, and how it impacts on our perception. We’re invited to change our description from ‘suffering from dementia’ to ‘living with dementia’, for example, on the recommendation of the Alzheimer’s Society. I admit to finding this hard; ‘living with dementia’ doesn’t sit easy on my tongue – and when I later refer to my experience of a friend with the condition, I can’t manage anything other than my customary ‘she has dementia’. The rejection of the word ‘suffering’ is about trying to rehabilitate the negative images, of course, and dementia specialist Victoria Forsythe (General Manager of Elton House) gives other illustrations: ‘aggressive’ is out, for example, replaced by ‘frustrated’ with its connotations of unhappiness rather than wilful violence. “And we don’t describe people as ‘wandering’ any more; we say they’re ‘walking’. Just because we don’t know the purpose doesn’t meant there isn’t one…”.

You could dismiss this as political correctness, of course, but getting the language right is critical to improving our understanding. I recall a BBC television drama from the late 70s or early 80s. Based on a true story, and called Where’s the Key?, it revolved around a middle-aged woman, Barbara, taking her young son to live with her elderly mother, after the breakdown of her marriage. Mother begins to behave increasingly irrationally and it is established, the programme abstract explains, ‘that she is suffering from acute senile dementia’. Barbara tries to cope but the situation, in which she has no support, becomes heartbreakingly difficult and unmanageable; the image of the old lady – staring out at the camera in a rare moment of lucidity, describing how she feels, and asking, plaintively, ‘where’s the key?’ – has lived with me ever since.

The programme description, you’ll note, calls the condition ‘senile dementia’. At least, as a society, we have learned to drop the word ‘senile’. Although the risk of developing dementia increases with age to one in 14 over the age of 65 (and one in six over the age of 80), the first of the five Key Messages of our Dementia Friends session is this: Dementia is not a natural part of ageing. An estimated 40,000 people under 65 are living with dementia in the UK; indeed, people as young as 20-something have been known to develop the condition, though this is, thankfully, rare.

Closely linked to disassociating the connection of dementia with ageing is Key Message No 2: Dementia is caused by diseases of the brain. It’s about physical damage. Our session leader explains that the brain of a person with dementia can be compared to a string of fairy lights, each representing a memory, say, or a skill. Some of them work perfectly, some are dimming or flickering, some have switched off completely. I like too, an analogy that I come across later: the idea that memories and functions are like leaves on a tree, which gradually blow away, leaving just the bare branches; they too will wither and die in their turn.

The Social Care Institute for Excellence identifies that the most common early signs include ‘memory problems, decline in communication skills, recognition and coordination difficulties, disorientation, changes in behaviour, judgement and mood, and loss of daily life skills’. According to the Alzheimer’s Association, trouble with memory—specifically having difficulty recalling information recently learned—is often the first symptom of Alzheimer’s disease. Vascular dementia, by contrast, more usually manifests as a cognitive problem: difficulty with planning or organising, for example, or making decisions. Frontotemporal dementia, which is caused by damage to the parts of the brain which control behaviour and language, may indicate its presence by someone acting out of character or having trouble remembering words or losing fluency of speech.

Key Message No 3 aims, therefore, to overcome a common misunderstanding: Dementia is not just about losing your memory – it can affect thinking, communicating and doing everyday tasks.

I’m not unaware of this already, although the baldness of the presentation (every Dementia Friends session follows the same ‘script’ to ensure accuracy) and the supporting facts are sometimes hard to take. By now I’m definitely ready for Key Message No 4: It is possible to live well with dementia. The concept casts a ray of light into some quite dark material. Of course, ‘living well’ means something different to everyone, and at each point in the progression will require appropriate support, but people can – at least in the early stages – work, maintain relationships, contribute to public life and continue with hobbies such as reading, gardening and singing…

…which leads neatly into Key Message No 5: There’s more to a person than the dementia. The important point is to see the person first, to create ways of living in which those with dementia feel valued, empowered, happier. People will respond to care packages and support structures that take their uniqueness into account. We hear an anecdote about a woman with dementia whose constant tap-tap-tapping on the table was irritating and perplexing to her carers and fellow residents… until it was established that she had helped crack the Enigma code at Bletchley Park. Suddenly everyone realised that ‘tap, tap, tap’ was ‘dot, dot, dash.’ When the local Scouts came and tapped away in Morse code to her, the positive engagement with her former life undoubtedly supported a feeling of improved well being.

Similarly, but on a more domestic scale, Victoria later tells me about enabling some residents to assist with simple household activities – dusting, or washing up, say – within a dementia unit, meaning that they feel that they are making a contribution to their community. We may see that as socially inappropriate (it seems to bring particular comfort to older women who have been cast in a domestic role throughout their life) – but it’s a valid demonstration of a very individual approach that ‘increases personhood’.

Back in the 90s, Professor Kitwood’s innovative research projects and training courses were developed with the goal of challenging the existing culture of care. His aim was to understand, as far as it is possible, what care is like from the viewpoint of the person with dementia. The greater the understanding, the sooner society will change for the better.

Becoming a Dementia Friend is a step that everyone can take to arm themselves with knowledge and strategies to support family, friends and strangers who are living with dementia. Information is power – and the first stage in transforming how, as a nation, we think, act and talk about the dementia challenges that will dominate society in the rest of the 21st century.

www.alz.org • www.alzheimers.org.uk • www.dementiafriends.org.uk • www.dementiauk.org • www.scie.org.uk/dementia/living-with-dementia

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