This page shows the latest items from the Guardian Dementia newsfeed.
The Pitstop is just the latest nostalgic project created by staff to give residents spaces to reminisce and spend time with friends and family
For the first half of my career, working in a range of jobs across retail and manufacturing, I could not have imagined that my life’s work would turn out to be in dementia care. Everything changed when my husband became terminally ill in 2005, and I left my job to become his full-time carer.
Our next addition will be a purpose-built pub, in memory of a much-loved resident
Henk Blanken (The difficulty of dying well, 10 August) suggests that the responsibility for authorising euthanasia should lie with a “loved one”. I doubt this would work any better than leaving it to a doctor. My elderly mother coped with my father’s progressing dementia for six years, though the task was becoming impossible, because she could not bear to place him in a dementia unit. She finally agreed to do so only after the local hospital told her she must not take him back home after a minor stroke. This took away the burden of guilt at “abandoning” him. If it was hard for my mother to put her husband in a care home, how much harder, even impossible, would it be for anyone in similar circumstances to decide their loved one should die on their say-so, however rational that decision might be?
• Alzheimer’s is now the single most common cause of death in Britain. If severely affected, most Britons would not want treatment for life-threatening illnesses. A 2007 survey found that more than 60% would not wish to be resuscitated after a heart attack. Nearly three-quarters wanted to be allowed to die passively. Yet without very specific contrary instructions in a living will/advance decision, resuscitation and active treatment are medicine’s default positions.
Horticultural therapists reveal how outdoor projects help to support physical and mental health
Horticultural therapist Thomas Erskine enjoys a “sense of connection” when he works outdoors. Being wholly absorbed in an activity – taking in the immediacy of the environment – enables him “to lose the frenetic noise of a speeding world”.
Erskine runs gardening projects for people with learning disabilities and physical and mental health problems. He began his social care career in residential settings but found the environment frustrating and lacking meaningful activity. “I have always felt that social care is at its best when it’s focused and activity-based,” he says, “as these are often the times when people loosen up and start to have a more positive focus.”
Medic is under investigation after report finds drug was also slipped into the woman’s drink
A doctor is under criminal investigation over a potential breach of Dutch euthanasia laws after slipping a sleeping drug into a woman’s coffee before asking family members to hold her down to allow the insertion of a drip through which a fatal dose could be administered.
The Dutch medical complaints board has reprimanded the doctor, who retired in after her treatment of the 74-year-old patient, who had been suffering from severe dementia. The chief public prosecutor in The Hague is examining if there are grounds for criminal charges.
French and Italian classes are improving self-confidence and wellbeing as well as cognition – even for those with dementia
When a notice appeared advertising French classes in Dundonald House care home in Ayrshire, Mari Dougan was surprised her parents were interested in attending.
Dougan’s mum, Patricia, has lived at the home for two years, and has had dementia for the past nine, losing most of her speech. Despite this, the course was something she and her husband, Eric, could do together, and the whole family has noticed a change in her.
Buprenorphine linked to an increase in side-effects including sedation and confusion, scientists find
A painkiller commonly used by people living with dementia could make symptoms worse, according to researchers who found it was linked to an increase in problematic side-effects including sedation and confusion.
The painkiller buprenorphine is an opioid that is available in several forms, including as a patch that delivers the drug through the skin. It is thought to result in fewer side-effects than morphine, with the added benefit that it can be given to people who have difficulty swallowing.
From cancer to dementia, UK patients are benefiting from a democratised system of research
It started with a lump on Cathy Perkins’ index finger. The viola player didn’t know what it was; nor did her GP. The eventual diagnosis in 2008 from the Christie cancer hospital in Manchester was melanoma – skin cancer – but after treatment all seemed well. Then in 2013, a routine scan showed it had come back and spread to her lungs.
“They came back with this really bad diagnosis of just a few weeks to live,” said Perkins. “I burst into tears. I packed in work on the spot. I just remember being incredibly angry that my planned retirement had gone pear-shaped.”
For people with Alzheimer’s and other degenerative diseases, just navigating around the house can be difficult and disorientating. But some pioneering approaches are offering new solutions
One sunflower painting looks like another here, each numberless door is identical and I am hopelessly disoriented; desperate to find an exit, a shaft of light, even. I turn right, up another featureless corridor, and then left and then right again – but is this really the way I came?
It’s a relief when a researcher removes my virtual reality headset, but it takes a few moments for my heart rate to return to baseline. I am at Bournemouth University’s department of psychology, where Jan Wiener and his team are researching the difficulties people with dementia have with wayfinding (orienting oneself in physical space). I have just briefly experienced the spatial disorientation that characterises Alzheimer’s, but for Wendy Mitchell, who lives near Hull in Yorkshire, it’s a perpetual experience. Diagnosed with the condition almost four years ago, when she was 58, she now travels around the country raising awareness of dementia. Her journeys demand precision planning. “I have a pink file that’s stuffed with information,” she says. “Walking maps to and from venues, pictures of venues, so they look familiar. My phone with Google maps talking to me. The occasional venue has a video walking map – these are wonderful. It’s important not to panic. I look for the first smiley face to come along and ask them the way or where I am.”
Observer columnist Katharine Whitehorn’s son on the difficulties of dealing with decline
So it’s out. My mother, Katharine Whitehorn, has Alzheimer’s disease. She who has lived entirely by her wits has now lost them. Sounds cruel? Try watching a dignified and private person lose everything they value, suffer every humiliation you can imagine, if you want to know what cruelty means.
I can’t remember exactly when Kath told us what was up. We were walking on Hampstead Heath. She had been undergoing various investigations to explain, aside from her deteriorating memory, some troubling episodes of confusion, even hallucination. Now the result was in. I wasn’t hugely surprised, but still the word carried the ring of finality.
Research reveals strains of virus more abundant in brains with early stage of disease, though uncertainly whether virus is a trigger or a symptom
The presence of viruses in the brain has been linked to Alzheimer’s disease in research that challenges conventional theories about the onset of dementia.
The results, based on tests of brain tissue from nearly 1,000 people, found that two strains of herpes virus were far more abundant in the brains of those with early-stage Alzheimer’s than in healthy controls. However, scientists are divided on whether viruses are likely to be an active trigger, or whether the brains of people already on the path towards Alzheimer’s are simply more vulnerable to infection.
There is still some way to go with John’s Campaign (“Four years after my father died, I feel we’ve reached a milestone in our fight for dignity in dementia care”, Focus).
My mother was admitted to hospital overnight, 200 miles away. I phoned the ward in the morning to inquire how she was before I set off on the journey. I was told they couldn’t talk to me unless I gave them a password. On asking how to get one, I was told I would need to visit with ID. My mother’s dementia meant she would have been totally unable to verify any information herself.
Possible reason for link could be damage from silent or mini-strokes, researchers say
Fifty-year-olds with slightly raised blood pressure are at an increased risk of getting dementia in later life, a new study has suggested.
Study participants had a greater risk even if they did not have other heart-related problems, the research published in the European Heart Journal said.
Not long ago, I met an old woman whom I can’t get out of my mind. She was wandering a residential street asking people where her husband was – she needed to find him so he could take her home. But her husband had died many years ago and was buried in a nearby churchyard. Another woman I came across in a nursing home stumbled toward me saying over and over: “Hymns of comfort, hymns of comfort.” I held her arm and said someone would come to help her soon. Her reply was a lament: “No one is coming. No one is coming ever.” No one and never: what must it be like to feel so helpless, so lost and alone?
Against these forlorn images I set more hopeful ones: the merry birthday tea party in a hospital dementia ward, say, where patients, carers and nurses sang Happy Birthday around a treacle tart. Or the boy walking with his grandfather in the dementia garden of a provincial hospital. Or the middle-aged daughter sitting by her mother’s bed in a ward, softly singing to her as she fell asleep; perhaps they were songs the old woman had heard as a child.
This a tangible milestone, and a demonstration that the culture around care for those with dementia and frailty is changing
Millennials hold most negative attitudes, with 40% believing dementia is inevitable
Ageism is rife in Britain, with millennials holding the most negative attitudes towards ageing, according to a study.
A quarter of millennials believe it is normal for older people to be unhappy and depressed, while 40% believe there is no way to escape dementia as you get older, research from the Royal Society for Public Health (RSPH) shows.
An exhibition in London looked at how digital touch technologies could reconnect a person in care with their loved ones
Touch is a fundamental part of human interaction. Even when our communication is mitigated by technology, as it so frequently is nowadays, it’s often via some sort of touchscreen. But as far as physical interaction with other human beings in the same space, some people think we’re living through a crisis of touch, especially when it comes to older people.
Concern rising about a spike in serious accidents involving older drivers
About 57,000 drivers aged 75 and over displayed symptoms when they renewed their driving licences during the 12 months to the end of March, according to the national police agency.
Far from being a frivolity, beauty treatments can lift residents’ moods and encourage a sense of individuality
“One of my clients is 99,” says Kelly Anthony. “She never wore makeup all her life and now she’s probably one of the most glamorous ladies in the care home.”
Anthony works as a beautician in care homes across south Wales with her company Beautiful You UK. Far from being a frivolity, she argues that treatments can lift residents’ moods and boost self-esteem, and that even very elderly people and those with dementia enjoy them.
A woman attempts to reconnect with her past self in a game that aims to recreate the experience of early-onset dementia
When you’re playing Before I Forget, wandering around a house inspecting everyday objects, trying to trigger a memory, it feels like a lot of narrative-driven video games: you’re attempting to piece together a story using clues left behind. But this game puts you in the shoes of Sunita, a woman suffering from early-onset dementia, which infuses what you’re doing with sadness and significance. The house is delineated in monochrome, colour seeping back as she gradually reconnects with her past self. Examining a photograph provides a clue to her identity; a familiar piece of music might recall an important person in her life.
Other symptoms are conveyed in more disconcerting ways. Sunita can become lost in her own home in a nightmarish loop, opening doors that all lead to the same dark broom cupboard. Before I Forget was exhibited as part of The Leftfield Collection’s experimental indie-game lineup at Rezzed games convention in London earlier this year. Developer 3-Fold Games hopes to provide a sensitive and emotive portrayal of dementia.
After 35 years working with people with dementia, and having a father who has had Alzheimer’s disease for the past five years, I find it hard to be certain that I know what people with dementia are thinking and if they judge life in the same way as before they had dementia (Why do we keep people alive against their wishes?, 29 May). Their lives are certainly different from ours and what theirs once was, but are they “empty husks”? Katharine Whitehorn is no longer a journalist, mother, friend, etc, and my father is no longer a veteran, great-grandfather etc; they can no longer recall any of that, and it is distressing for us who remember them as such to see that and the loss of their ability to care for themselves, but is it equally distressing for them? What is their experience of this new reality? That is a much harder question because we can only observe from the outside.
The people I’ve seen seem to have very varying experiences of dementia. Some appear very distressed, others relatively happy, and this experience can appear to vary greatly both from person to person and from day to day for an individual, much like life does for the rest of us. I had a trip to accident and emergency with my father which covered many hours and which at the time we both found upsetting, yet later he recalled it as trip to an interesting exhibition while I recalled trauma.
Dr Chris Allen
Consultant clinical psychologist and dementia lead, Windsor, Ascot and Maidenhead, Berkshire NHS Foundation Trust
There isn’t much about last year’s general election that Theresa May is in a hurry to revisit, least of all the plan to reform social care by a mechanism that came to be known as the “dementia tax”. The pitch was poor, but the concept deserved a fairer hearing. Outside the partisan frenzy of a campaign, it might have started a necessary conversation about long-term funding to meet the costs of an ageing population.
New research published today lays bare the challenge. A model developed by the Health Foundation, a charity, and the Institute for Fiscal Studies anticipates demand for spending on adult social care to rise by 3.9% a year over the next 15 years. Over the same period, the population over the age of 65 is expected to increase by 4.4 million; and the number over 85 by 1.3 million.