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How to live well with dementia

by
24 June 2016

Pat Ashworth discovers that there are ways to lighten the burden of dementia

Alamy

Affectionate: some find that people with dementia become more loving

Affectionate: some find that people with dementia become more loving

THE facts are unremitting. Some 850,000 people in the UK have dementia — a figure likely to rise to a million by 2021. One in three people will care for someone with dementia in their lifetime, and dementia costs society an estimated £26.3 billion a year.

The word “dementia” is short­hand for a broad range of condi­tions, a set of symptoms that in­­clude loss of concentration and mem­ory problems, mood and beha­v­i­our changes, and problems with communicating and reasoning. About 60 per cent of people with dementia have Alzheimer’s, the commonest type; 20 per cent have vascular dementia, which results from problems with the blood sup­ply to the brain; and many people have a mixture of the two. Less common forms of dementia include dementia with Lewy bodies, and frontotemporal dementia.

Alzheimer’s is progressive. There is currently no cure. But much can be done to help someone to live well with the condition, including giving drugs that can temporarily alleviate some symptoms, or slow down their progression in some people. Tried and tested therapies, together with support and activ­ities, can help to combat anxiety and de­­pression, the Alzheimer’s Society says.

 

THE prevalence of the condition led to the publication, in 2015, of The Prime Minister’s Challenge on De­­men­tia 2020, an ambitious and detailed programme of action to bring sustained improvements in health and care, to create dementia-friendly communities, and boost re­­search into dementia.

Public Health England and the Alzheimer’s Society have achieved their goal of getting a million “Dementia Friends” by 2015, and have reset the target to three million. A Dementia Friend “learns what it is like to live with dementia, and then turns understanding into action — for example, by giving time to a local service such as a dementia café, or by raising aware­ness among colleagues and friends about the condition”.

Churches are included here: those that are well prepared can offer a lifeline to people with de­men­tia, help­­ing them to stay con­nected to spiritual and com­munity life, a new report, Devel­oping Dementia-Friendly Church, says. It is produced by Livability and the Alzheimer’s Society (News, 3 June). “Memory cafés” are flour­ishing, locations for Rem­iniscence Ther­apy, based on the under­standing that memories from many years ago often remain intact in a person who has dementia.

Recalling these mem­ories can be im­­mensely therapeutic and enjoy­able, especially where the richness of people’s experience can be shared. Advocates say that awaken­ing mem­ories by using postcards and arte­­facts is a sociable activity, boosting self-esteem, and helping people not only to make valuable connections between past and present, but some­times to resolve and make sense of a past event.

SINGING, as I know from personal experi­ence, is one of the most helpful activities for people who have dementia. I go fortnightly with a friend to a “Singing for the Brain” session run by the Alzheimer’s So­­ciety.

Veronica, a former biologist and magis­trate, is now in a dementia care-home. She can no longer re­­mem­­ber which side of the car to get into, nor, sometimes, what a cup of coffee is; and conversation as we knew it is no longer there. But the singing is remarkable: I can still hear the alto in her voice.

More than that, she lights up, and visibly blossoms in the company of the 60-or-so singers who have be­­come so familiar to us over the past 18 months. We belt out every­thing from the “Skye Boat Song”, “Danny Boy” and “Loch Lomond” to “Morn­ing­town Ride”, “I love to go a-­­wandering”, “Is this the way to Amarillo”, and even a gutsy “These boots were made for walking”.

She can no longer find the right page number in the song sheet, but the words come out from some­where deep inside her. Breathing and voice exercises reduce stress and anxiety. There’s a lot of laughter and larking about. The leader of the session, Angela Warren, says: “Sing­ing can raise the spirits of both the person with dementia, and their carer or family member.

”Often, a diagnosis of dementia can bring with it a depression that is very difficult for both the person with the diagnosis, and their loved ones. The session is one afternoon when the diagnosis can, perhaps, slip away, and both people are having fun together, and joining in with other people and making friends.”

Songs evoke memories. Angela recalls a session where “Oom-pah-pah” was sung, prompting one woman’s memories of Nottingham’s old Bierkeller. “She was able to tell about standing on tables and drinking big, frothy beer. Other people responded with their own memories of the Keller. It will always remain one of those magic mo­­ments,” Angela says.

Such familiar songs work well with a group, but Angela has also found that everyone embraces the chance to learn something new. She uses a “call and response” method to teach short and simple Australian greetings, African melodies, and Native American chants. “It was something I avoided in the early days. I thought people wouldn’t be able to cope,” she says. “How wrong I was.

”So a session can be a combina­tion of soothing familiarity coupled with a small challenge, which is so good for the self-esteem.”

We finish always with a song to each other that is almost a blessing: “Shalom, my friend, shalom, my friend, shalom, shalom. Until we meet again, my friend, shalom, shalom.”

The Gloucestershire-based char­ity Mindsong, one of 26 contribut­ing organisations in the fields of adult social care, music, and health-care research, recently launched the project “A Choir in Every Care Home” to explore ways in which singing could feature regularly in such homes across the country. It is urgently needed, the charity says, given that 70 per cent of the grow­ing number of people in care homes have dementia or severe memory problems.

INDIVIDUALS in the field of man­aging dementia include Penny Garner, who launched her inde­pend­ent charity, the Contented Dementia Trust, in 2002, after more than a decade of work among people with dementia at Burford Hospital.

Her mother, who died in 1994, had had dementia for more than ten years. It was “almost taking dicta­tion from her”, as she made what Mrs Garner considered to be aston­ishing remarks, which prompted her to take note.

”She was an inveterate traveller,” Mrs Garner remembers. “We were sitting in the doctor’s surgery when she said: ‘Has our flight been called yet?’ I learned over time that the answer in that situation is ‘No, not yet.’ She was trying to find facts to express a feeling. Ten minutes later, she asked: ‘Where is our luggage?’ When I said it had been checked in, that was fine. She said, ‘Just hand luggage. Excellent.’”

That was the first time, Mrs Garner says, that she had looked at the room through her mother’s eyes. Years later, she began to build up the methodology that is now known as the SPECAL method (Specialised Early Care for Alz­heimer’s), and is the subject of a book, Contented Dementia, by the clinical psychologist Oliver James.

She realised that people with dementia had not lost their reason, their ability to reason, or their wish to reason. What they had lost was the factual information from the recent past which would enable them to reason. “My mother was going back through what I began to describe as the metaphorical ‘photo­graph album’ we are given as a memory system when we are born, and into which goes everything we have ever done.

“We know we own photos of what we have just been doing, and we reference them all the time. Most of the information we need at any moment tends to be of something recent, to make sense of what we are doing at that moment.

“The recent stuff wasn’t there for my mother, who was going back in her album to make a sensible, rational match from her pre-dementia past, to make sense of what she saw around her. Why disturb the sense a person is making of their surroundings, and argue with them? There is no need, if it enables them to function in the present.”

WITHIN this SPECAL metaphor, a normal photograph, she explains, contains a central portion of facts, and a framework of feelings around them. “At any moment, we are able to reference what we were doing, and how we felt about it. The person with dementia has a new type of ‘photograph’ in their album, which contains only feelings, without the associated facts.”

After diagnosis, the model should be about disability, not disease, she says — the equivalent of someone having lost a limb in their memory system, and already in possession of the spare artificial limb, “which is their intact photographs of what they did a long time ago. Everything they are accessing from the past needs
to be linked to the activities of daily life today, to help a person with de­mentia circumnavigate practical things like eating and drinking, getting dressed, and personal care.”

The general principles of the SPECAL photograph album, with its three golden rules and associated method of managing dementia, are designed to keep conversation up by cueing in a line of enquiry which does not require the person to consult their recent past for an answer: “Not, ‘Would you like a cup of tea?’ but, rather, something like: ‘I think I might have a cup of tea,’ in a chatty way, which makes it much easier for the other person to respond.”


SPECAL’s other golden rules are to listen very carefully to the questions that people with dementia ask, and not to contradict them. “Use the minimum facts that are needed to promote the feelings we want the person with dementia to experience — they store all the new feelings, but progressively fewer facts. If you adopt this method, you really can sustain what we call ‘contented dementia’.”

The theory has grown out of practice, and does not sit well with the medical Establishment. Critics say that Mrs Garner’s approach takes away dignity and choice from the person by discouraging carers from asking direct questions. The trust’s work is endorsed and valued by carers, but, until it is peer-reviewed, experts in the field remain to be convinced. In response, money has been raised for a three-year research programme with King’s College, London, which is just beginning.


SOMEONE else who emphasises listening to people with dementia is the psychotherapist Maggie La Tourelle, who documents in her book, The Gift of Alzheimer’s, con­versations she had with her mother in a care home. These persuaded her that attentive listen­ing to someone with Alzheimer’s could yield pro­found spiritual insights, and be an opportunity to heal family relation­ships.

”The disease enabled her to give and receive love as she had not done before, and to have wonderful other-world experiences that prepared her for a good death and the next jour­ney,” she writes. Indeed, she found many “glimpses of wisdom, clarity, and insight” as her mother pro­gressed towards the end stages of the condition, and she remains con­vinced that the loving relationship that developed between them is a real possibility for anyone.

“The change from a negative state of mind to a positive one is reported in many people when they have reached this late stage and sur­rendered to their condition,” she says. “It suggests that much of the suffering that is talked about is in the eye of the beholder, rather than in the person with Alzheimer’s.

“If we acknowledge our own distress as a response to this situa­tion, instead of projecting it on our loved ones, maybe that will free us to engage with them in a more positive way.”

This year's Greenbelt line-up includes a strand of talks on living well with dementia, featuring Professor John Swinton, Sally Magnusson and Rebecca de Saintonge 

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19 October 2020
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In association with RSCM, this online event will explore creative uses music and liturgy in the context online and socially distanced worship.    Book tickets

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