Tag Archives: dementia

Dementia risk to 50-year-olds with raised blood pressure – study

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.

The association between blood pressure and dementia risk was seen at aged 50, but not 60 or 70, the study found.

People aged 50 with a systolic blood pressure of 130 mmHg, which is between the ideal blood pressure range (90/60mmHg and 120/80mmHg) and that considered to be high (140/90mmHg), or above had a 45% greater risk of developing dementia, scientists said.

Those taking part in the study developed dementia at an average age of 75.

Dr Jessica Abell, paper author and a research associate in dementia and epidemiology at University College London, said the study looks in more detail at what is considered “midlife”.

She said: “Previous research has not been able to test the link between raised blood pressure and dementia directly by examining the timing in sufficient detail.

“In our paper we were able to examine the association at age 50, 60 and 70, and we found different patterns of association. This will have important implications for policy guidelines, which currently only use the generic term ‘midlife’.”

Prof Archana Singh-Manoux, honorary professor at UCL, led the research and said: “Our work confirms the detrimental effects of midlife hypertension for risk of dementia, as suggested by previous research. It also suggests that at age 50, the risk of dementia may be increased in people who have raised levels of systolic blood pressure below the threshold commonly used to treat hypertension.”

Researchers suggested a possible reason for the link could be resulting damage from silent or mini-strokes, which often have unnoticed symptoms and are linked to high blood pressure.

Dr Abell noted that the findings were from “observational, population-level research” and therefore “do not translate directly into implications for individual patients”.

The research analysed 8,639 people, part of the long-running Whitehall II study of more than 10,000 civil servants tracked since 1985.

Dementia risk to 50-year-olds with raised blood pressure – study

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.

The association between blood pressure and dementia risk was seen at aged 50, but not 60 or 70, the study found.

People aged 50 with a systolic blood pressure of 130 mmHg, which is between the ideal blood pressure range (90/60mmHg and 120/80mmHg) and that considered to be high (140/90mmHg), or above had a 45% greater risk of developing dementia, scientists said.

Those taking part in the study developed dementia at an average age of 75.

Dr Jessica Abell, paper author and a research associate in dementia and epidemiology at University College London, said the study looks in more detail at what is considered “midlife”.

She said: “Previous research has not been able to test the link between raised blood pressure and dementia directly by examining the timing in sufficient detail.

“In our paper we were able to examine the association at age 50, 60 and 70, and we found different patterns of association. This will have important implications for policy guidelines, which currently only use the generic term ‘midlife’.”

Prof Archana Singh-Manoux, honorary professor at UCL, led the research and said: “Our work confirms the detrimental effects of midlife hypertension for risk of dementia, as suggested by previous research. It also suggests that at age 50, the risk of dementia may be increased in people who have raised levels of systolic blood pressure below the threshold commonly used to treat hypertension.”

Researchers suggested a possible reason for the link could be resulting damage from silent or mini-strokes, which often have unnoticed symptoms and are linked to high blood pressure.

Dr Abell noted that the findings were from “observational, population-level research” and therefore “do not translate directly into implications for individual patients”.

The research analysed 8,639 people, part of the long-running Whitehall II study of more than 10,000 civil servants tracked since 1985.

Dementia risk to 50-year-olds with raised blood pressure – study

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.

The association between blood pressure and dementia risk was seen at aged 50, but not 60 or 70, the study found.

People aged 50 with a systolic blood pressure of 130 mmHg, which is between the ideal blood pressure range (90/60mmHg and 120/80mmHg) and that considered to be high (140/90mmHg), or above had a 45% greater risk of developing dementia, scientists said.

Those taking part in the study developed dementia at an average age of 75.

Dr Jessica Abell, paper author and a research associate in dementia and epidemiology at University College London, said they study looks in more detail at what is considered “midlife”.

She said: “Previous research has not been able to test the link between raised blood pressure and dementia directly by examining the timing in sufficient detail.

“In our paper we were able to examine the association at age 50, 60 and 70, and we found different patterns of association. This will have important implications for policy guidelines, which currently only use the generic term ‘midlife’.”

Prof Archana Singh-Manoux, honorary professor at UCL, led the research and said: “Our work confirms the detrimental effects of midlife hypertension for risk of dementia, as suggested by previous research. It also suggests that at age 50, the risk of dementia may be increased in people who have raised levels of systolic blood pressure below the threshold commonly used to treat hypertension.”

Researchers suggested a possible reason for the link could be resulting damage from silent or mini-strokes, which often have unnoticed symptoms and are linked to high blood pressure.

Dr Abell noted that the findings were from “observational, population-level research” and therefore “do not translate directly into implications for individual patients”.

The research analysed 8,639 people, part of the long-running Whitehall II study of more than 10,000 civil servants tracked since 1985.

Who are we to judge the lives that people with dementia are living? | Letters

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

Polly Toynbee describes Katharine Whitehorn as still often recognising people, not suffering, not experiencing indignity, placid with flashes of lucidity, not dying but “not herself”. And there the philosophical problem cannot be brushed aside. For if she is “not herself” or not “the real Katharine”, then we really don’t know what wishes the woman with that name has: we only know what the person she once was wanted a long time ago (not last week) – hardly compelling grounds for killing her in her present state.

Moreover, the sad truth in many such situations is that the family and friends suffer, not the patient. If that level of intellectual function itself is worse than death, then the rights of mentally disabled people can’t be so casually ignored.
Prof John Saunders
Abergavenny, Monmouthshire

Polly Toynbee’s article  needs to be sent to the 26 bishops and other believers in parliament who have repeatedly prevented us from gaining the right to die in dignity. With Ireland now demanding “my body, my rights”, perhaps the time is ripe for us “oldies” to demand the same. I am 90 and like so many of us do not fear death, just continuing to live when there is no quality left in life. How we would enjoy our later years if we knew we did not have the eternal worry of how will it end.
Joan Carter
Torrington, Devon

Polly Toynbee takes a swipe at “the religious” but ignores the medical profession, which implacably opposes her view. One reason for this might be the fact that one person’s right to die may become another person’s duty to kill in cold blood. Is it any wonder doctors have their doubts?
John Pritchard
Basingstoke, Hampshire

Polly Toynbee’s article about Katharine Whitehorn strikes a particular resonance with me as my own mother is also aged 90 and in a care home, suffering with dementia. Katharine Whitehorn was my guru. Over the years it has been a delight to follow her column in the Observer, and to learn (for example) to be grateful that I didn’t have to encourage my child to eat up its nice river snails. Nobody asks to end up as one of Jonathan Swift’s struldbrugs.

At the same time as we are keeping older people in a horrible and undignified half-existence, we impose so much stress on students that they become suicidal (Letters, 29 May). You give contact details for the Samaritans. If only we had a National Mental Health Service worthy of the name, rather than relying on volunteers and the police as the first port of call for those suffering from a mental health crisis. How did we end up with an NHS that keeps old people alive when they ought be dead, but allows young people to die when they ought to be alive?
Rose Meade
Faversham, Kent

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Tawel Fan scandal: inquiry rejects dementia abuse claims

An inquiry into the care of dementia patients on a troubled mental health ward in north Wales has been described as a “whitewash” after it said there was no institutional abuse.

The findings of an in-depth investigation into the treatment of patients on Tawel Fan ward at Glan Clwyd hospital in Denbighshire, contradicted those of an earlier inquiry.

The ward was closed in December 2013 and two years later an inquiry uncovered “institutional abuse”, which may have violated the human rights of patients.

A new investigation by the independent Health and Social Care Advisory Service did not substantiate the previous claims and said there was a “good overall general standard” of care on the ward.

It carried out more than 100 interviews with families and staff and examined over half a million pages of information including police transcripts, medical records, staff records and corporate records.

Darren Millar, the Conservative assembly member for Clwyd West, said: “Many will describe today’s report into Tawel Fan as a whitewash and will question the independence of the process which has led to its publication.

“Any organisation with links to the Welsh government or the Labour party involved in sensitive work of this kind should have a duty to disclose that to stakeholders upfront.

“The failure to do so in this case has given rise to a serious breach of trust and undermined the confidence of the Tawel Fan families that this was a genuine quest for truth.

“We are now almost four-and-a-half years on from the closure of the ward and yet, instead of answers, the Tawel Fan families have even more questions about the care of their loved ones.”

He added that the “Tawel Fan families and the people of north Wales deserve better” and called for “a cross-party assembly inquiry to ensure that we get to the bottom of what happened once and for all.”

Angela Burns, the Welsh Conservative party’s health spokeswoman, said: “When compared with the initial work undertaken by Donna Ockenden, who exposed ‘institutional abuse’ on the ward, the findings in today’s report cause concern of a different nature.

“Transparency and honesty are vital in all areas of public service delivery – particularly when scandals hit our most treasured public service.”

The Welsh health secretary, Vaughan Gething, demanded that the health board makes further improvements to services but urged caution over jumping to conclusions about the findings.

“The investigation had a much wider remit and, unlike the previous report, was able to access a comprehensive set of documentation, including clinical records, and draw in specific mental health expertise,” he said.

“This is a very substantial report that warrants further careful reading and consideration.

“Whilst this will be very difficult day for both families and staff who were involved or affected by the investigation, I would hope that these findings can act as a catalyst to the lifting of a dark shadow that has extended over mental health services in north Wales for a number of years.”

The health board said that, although the inquiry had revealed “systemic organisational weaknesses”, there had since been “substantial improvements” to services.

In a joint statement, the board’s chairman Dr Peter Higson and chief executive Gary Doherty said: “The investigation found the overall standard of care on the ward to be generally good and found no evidence to support the view that patients suffered from deliberate abuse or wilful neglect.

“However, it found that some patients did not receive the standard of care that we would expect across our services.”

They added: “ We are clear that we have much more to do to make improvements across all of our adult services – not just mental health services.”

Dementia patients ‘dehumanised’ by hospital restraint techniques – report

Hospital staff are sometimes confining patients with dementia to bed through controversial “containment and restraint” techniques, new government-funded research reveals.

The findings, paid for by the National Institute for Health Research, reveal that nurses and healthcare assistants are raising the siderails of beds and tucking bedsheets tightly around patients with dementia, reducing their mobility. Others are prevented from getting up by their walking frames being put out of reach or by being sedated with drugs. The techniques are used, say the researchers, because of an exaggerated fear that patients will fall if left to move around the ward freely. The study says the tactics lead to the “dehumanisation” of patients, leaving them angry and highly stressed and worsening their already poor health.

The findings, which have been shared with the Observer, have triggered a fresh row over how the NHS treats people with dementia, who occupy up to half the beds in some hospitals. Dr Eileen Burns, president of the British Geriatrics Society, which represents doctors, nurses and therapists who work with older people, said: “These findings are a huge concern. Sometimes the use of containment techniques is not justified.”

Burns added that too many ward staff perform “a custodial role” towards inpatients with dementia, though she said containment was sometimes needed to benefit the patient’s own health, as when bandages were placed over drips so they cannot be removed.

The research was undertaken by Dr Katie Featherstone, a reader in the sociology of medicine at Cardiff University and Dr Andy Northcott, a lecturer in allied health sciences at De Montfort University, Leicester. They studied in detail how dementia patients in 10 wards of five unnamed hospitals in England and Wales were treated over the course of 18 months. It was funded by the National Institute for Health Research, the Department of Health and Social Care’s research arm.

The researchers found that many dementia patients resist and reject the care provided to them in hospital because they are unhappy at their treatment, sometimes refusing to eat, or removing drips. Many protest at regimented regimes of fixed mealtimes and drug rounds they encounter while being treated for an ailment such as a breathing problem, broken bone or a urinary tract infection.

“At the bedside, staff response to resistance to care was one of containment and restraint. Raising the side rails of the bed or tucking bed sheets in tightly around the patient were both common means to contain a patient within the bed,” the study says. “For those sitting at the bedside, the close placement of the mobile tray table, unreachable walking frames and technologies such as chair alarms were used to contain people and keep them sitting in their bedside chair.”

Featherstone and Northcott conclude that the way staff deal with dementia patients, and the use of containment techniques, is “frequently the trigger of resistance or cause of patient anxiety”, though staff sometimes wrongly blame that on the dementia itself.

Their findings echo previous reports detailing inadequate care received by dementia patients published by Sir Robert Francis and the Care Quality Commission amongst others.

Featherstone told the Observer: “People with dementia on wards generally have early to mid-stage dementia. But part of the problem is that when they are admitted to an acute ward, staff see them as having late-stage dementia, so assume they can’t eat, drink, stand, walk or go to the bathroom independently, even though they still can, and don’t let them keep doing these things. Staff see them as being quite helpless, even though they aren’t.

“When staff react like that, that breeds resentment and high levels of anxiety and resistance to care, for example patients refusing to take their medication, and triggers unhappiness. It’s very isolating and scary for people with dementia to be in hospital. They are a difficult population to handle, and very needy, and I think there’s a strong sense that staff resent them being there,” she said.

Burns said containment was sometimes needed to benefit the patient’s own health, for example, putting a bandage over a drip so it cannot be removed. Lack of staff means nurses do not have the time to talk to patients about their lives or look at old photographs with them to give them mental stimulus, she added.

Q&A

What are the financial pressures on the NHS that have built up over the last decade?

Between 2010-11 and 2016-17, health spending increased by an average of 1.2% above inflation and increases are due to continue in real terms at a similar rate until the end of this parliament. This is far below the annual inflation-proof growth rate that the NHS enjoyed before 2010 of almost 4% stretching back to the 1950s. As budgets tighten, NHS organisations have been struggling to live within their means. In the financial year 2015-16, acute trusts recorded a deficit of £2.6bn. This was reduced to £800m last year, though only after a £1.8bn bung from the Department of Health, which shows the deficit remained the same year on year.

Read a full Q&A on the NHS winter crisis

The Department of Health and Social Care declined to comment on the use of containment and restraint.

A spokeswoman said: “We expect everyone with dementia to be treated with the dignity and respect they deserve. That’s why we invested £50 million to make hospitals and care homes dementia-friendly.

“More than 875,000 NHS staff have undertaken awareness raising activities and we continue to support [NHS] trusts to sign up to the Dementia Action Alliance’s Dementia Friendly Hospital Charter.”

Mum has dementia and now Dad’s dead she will have to sell her home. Why? | Anne Penketh

When my father died suddenly in January at the age of 91, family and friends gave him a great send-off. We had a private cremation, an uplifting memorial service at church, and rounded off the day with a buffet at the golf club. The next day, Mum couldn’t remember anything about it. She kept asking whether Dad had died, how he had died, and obsessed about having to organise the funeral.

About 10 years ago Mum was diagnosed with dementia, the creeping and cruel illness that has stolen her short-term memory although not – yet – her vibrant personality. Thanks to round-the-clock care by my father, her memory problems worsened only gradually until his death. But in grief, her confusion has deepened significantly.

In the first weeks after he died, my brother and I would have to relive every few minutes, in response to questions from Mum about how he’d fallen down the stairs and knocked himself out. She kept on discovering for herself that he wasn’t there. Once she wandered into my bedroom in the middle of the night with her handbag under her arm, saying she was going to call the police because Dad was missing.

The doctor said that we should start with a social-needs assessment by the local authorities, which would help us with a care package. However, they told us that Mum would have to consent to an assessment by phone, which seemed surreal given her belief that she was running the household unaided. More than two months later we are still waiting for a face-to-face appointment and have been navigating the system on our own. One of my first discoveries was that because my mother has more than £23,250 in personal assets, including her house, she would be among the hundreds of thousands of “self-funders” forced to pay all her costs if she ended up in a care home.

While I was in the process of talking to care agencies and visiting homes trying to find out what would be in her best interests, Mum – who is very mobile and fit at 89, despite her condition – had a fall. She spent a day in hospital, which prompted us to take the wrenching decision to find a place for her in a residential home where she would be safe. How quickly we had reached the point where suddenly we were going to start burning through money and face the “catastrophic” costs recognised by the Dilnot commission in 2011.

‘Nothing has changed!’: May as she announces social care U-turn – video

Like so many others watching their savings being wiped out, I feel that our situation is unfair because dementia is an illness for which there is no cure and which strikes at random. My father never claimed a penny as one of the cohorts of unpaid family carers who now total 8% of the UK population. If Mum had been diagnosed with cancer, she would have received free care on the NHS, but with dementia she’s having to fend for herself. Why should she be penalised when others with a different illness are not?

Nothing has been done to reform this arbitrary and unjust policy of adult social care since the Dilnot commission recommended a cap on lifetime care costs and a more generous means test. After the coalition government backed the principle, Theresa May last year postponed the reforms that would have limited individual liabilities. Now the best chance for overhauling the funding system will be in a long-awaited green paper in May or June – which the government has said will contain options for asset caps and a means-tested floor.

With May proposing £4bn a year in extra spending for the NHS, Jeremy Hunt spelled out on 20 March his seven principles, in which he said social care should be the shared responsibility of the state and the individual. Adult social care has been led by local authorities since 1990 but now they are struggling to cope with budget cuts as well as the needs of a swelling elderly population living longer than ever. Having lost his grandmother to dementia, Hunt said he wants to end this illness “lottery”, which defines financial wellbeing under the current punitive system.

He hinted that younger people might take out social insurance for their care needs in old age, as part of an “equitable” approach to funding. Other options, also reviewed in a recent working paper by the King’s Fund, could include a dedicated tax for social care, including a possible tax on people’s homes after they die.

Resolving the social care crisis with a long-term financially sustainable approach will take time. It will cost billions and will be too late for my Mum, who will have to sell her house if she stays in the care home.

Why should young people care, saddled with debt from university fees and struggling to get a foothold on the housing ladder? Because dementia is a timebomb the devastating effects of which are being felt by families across the land. With cases steadily approaching the one million mark, it’s time for solidarity across the generations. We all pay for education, whether or not we have children. Whatever solution is found for social care in the future, it must be earmarked and include the principle of “we all help one another”.

Anne Penketh is a journalist and author

Mum has dementia and now Dad’s dead she will have to sell her home. Why? | Anne Penketh

When my father died suddenly in January at the age of 91, family and friends gave him a great send-off. We had a private cremation, an uplifting memorial service at church, and rounded off the day with a buffet at the golf club. The next day, Mum couldn’t remember anything about it. She kept asking whether Dad had died, how he had died, and obsessed about having to organise the funeral.

About 10 years ago Mum was diagnosed with dementia, the creeping and cruel illness that has stolen her short-term memory although not – yet – her vibrant personality. Thanks to round-the-clock care by my father, her memory problems worsened only gradually until his death. But in grief, her confusion has deepened significantly.

In the first weeks after he died, my brother and I would have to relive every few minutes, in response to questions from Mum about how he’d fallen down the stairs and knocked himself out. She kept on discovering for herself that he wasn’t there. Once she wandered into my bedroom in the middle of the night with her handbag under her arm, saying she was going to call the police because Dad was missing.

The doctor said that we should start with a social-needs assessment by the local authorities, which would help us with a care package. However, they told us that Mum would have to consent to an assessment by phone, which seemed surreal given her belief that she was running the household unaided. More than two months later we are still waiting for a face-to-face appointment and have been navigating the system on our own. One of my first discoveries was that because my mother has more than £23,250 in personal assets, including her house, she would be among the hundreds of thousands of “self-funders” forced to pay all her costs if she ended up in a care home.

While I was in the process of talking to care agencies and visiting homes trying to find out what would be in her best interests, Mum – who is very mobile and fit at 89, despite her condition – had a fall. She spent a day in hospital, which prompted us to take the wrenching decision to find a place for her in a residential home where she would be safe. How quickly we had reached the point where suddenly we were going to start burning through money and face the “catastrophic” costs recognised by the Dilnot commission in 2011.

‘Nothing has changed!’: May as she announces social care U-turn – video

Like so many others watching their savings being wiped out, I feel that our situation is unfair because dementia is an illness for which there is no cure and which strikes at random. My father never claimed a penny as one of the cohorts of unpaid family carers who now total 8% of the UK population. If Mum had been diagnosed with cancer, she would have received free care on the NHS, but with dementia she’s having to fend for herself. Why should she be penalised when others with a different illness are not?

Nothing has been done to reform this arbitrary and unjust policy of adult social care since the Dilnot commission recommended a cap on lifetime care costs and a more generous means test. After the coalition government backed the principle, Theresa May last year postponed the reforms that would have limited individual liabilities. Now the best chance for overhauling the funding system will be in a long-awaited green paper in May or June – which the government has said will contain options for asset caps and a means-tested floor.

With May proposing £4bn a year in extra spending for the NHS, Jeremy Hunt spelled out on 20 March his seven principles, in which he said social care should be the shared responsibility of the state and the individual. Adult social care has been led by local authorities since 1990 but now they are struggling to cope with budget cuts as well as the needs of a swelling elderly population living longer than ever. Having lost his grandmother to dementia, Hunt said he wants to end this illness “lottery”, which defines financial wellbeing under the current punitive system.

He hinted that younger people might take out social insurance for their care needs in old age, as part of an “equitable” approach to funding. Other options, also reviewed in a recent working paper by the King’s Fund, could include a dedicated tax for social care, including a possible tax on people’s homes after they die.

Resolving the social care crisis with a long-term financially sustainable approach will take time. It will cost billions and will be too late for my Mum, who will have to sell her house if she stays in the care home.

Why should young people care, saddled with debt from university fees and struggling to get a foothold on the housing ladder? Because dementia is a timebomb the devastating effects of which are being felt by families across the land. With cases steadily approaching the one million mark, it’s time for solidarity across the generations. We all pay for education, whether or not we have children. Whatever solution is found for social care in the future, it must be earmarked and include the principle of “we all help one another”.

Anne Penketh is a journalist and author

Mum has dementia and now Dad’s dead she will have to sell her home. Why? | Anne Penketh

When my father died suddenly in January at the age of 91, family and friends gave him a great send-off. We had a private cremation, an uplifting memorial service at church, and rounded off the day with a buffet at the golf club. The next day, Mum couldn’t remember anything about it. She kept asking whether Dad had died, how he had died, and obsessed about having to organise the funeral.

About 10 years ago Mum was diagnosed with dementia, the creeping and cruel illness that has stolen her short-term memory although not – yet – her vibrant personality. Thanks to round-the-clock care by my father, her memory problems worsened only gradually until his death. But in grief, her confusion has deepened significantly.

In the first weeks after he died, my brother and I would have to relive every few minutes, in response to questions from Mum about how he’d fallen down the stairs and knocked himself out. She kept on discovering for herself that he wasn’t there. Once she wandered into my bedroom in the middle of the night with her handbag under her arm, saying she was going to call the police because Dad was missing.

The doctor said that we should start with a social-needs assessment by the local authorities, which would help us with a care package. However, they told us that Mum would have to consent to an assessment by phone, which seemed surreal given her belief that she was running the household unaided. More than two months later we are still waiting for a face-to-face appointment and have been navigating the system on our own. One of my first discoveries was that because my mother has more than £23,250 in personal assets, including her house, she would be among the hundreds of thousands of “self-funders” forced to pay all her costs if she ended up in a care home.

While I was in the process of talking to care agencies and visiting homes trying to find out what would be in her best interests, Mum – who is very mobile and fit at 89, despite her condition – had a fall. She spent a day in hospital, which prompted us to take the wrenching decision to find a place for her in a residential home where she would be safe. How quickly we had reached the point where suddenly we were going to start burning through money and face the “catastrophic” costs recognised by the Dilnot commission in 2011.

‘Nothing has changed!’: May as she announces social care U-turn – video

Like so many others watching their savings being wiped out, I feel that our situation is unfair because dementia is an illness for which there is no cure and which strikes at random. My father never claimed a penny as one of the cohorts of unpaid family carers who now total 8% of the UK population. If Mum had been diagnosed with cancer, she would have received free care on the NHS, but with dementia she’s having to fend for herself. Why should she be penalised when others with a different illness are not?

Nothing has been done to reform this arbitrary and unjust policy of adult social care since the Dilnot commission recommended a cap on lifetime care costs and a more generous means test. After the coalition government backed the principle, Theresa May last year postponed the reforms that would have limited individual liabilities. Now the best chance for overhauling the funding system will be in a long-awaited green paper in May or June – which the government has said will contain options for asset caps and a means-tested floor.

With May proposing £4bn a year in extra spending for the NHS, Jeremy Hunt spelled out on 20 March his seven principles, in which he said social care should be the shared responsibility of the state and the individual. Adult social care has been led by local authorities since 1990 but now they are struggling to cope with budget cuts as well as the needs of a swelling elderly population living longer than ever. Having lost his grandmother to dementia, Hunt said he wants to end this illness “lottery”, which defines financial wellbeing under the current punitive system.

He hinted that younger people might take out social insurance for their care needs in old age, as part of an “equitable” approach to funding. Other options, also reviewed in a recent working paper by the King’s Fund, could include a dedicated tax for social care, including a possible tax on people’s homes after they die.

Resolving the social care crisis with a long-term financially sustainable approach will take time. It will cost billions and will be too late for my Mum, who will have to sell her house if she stays in the care home.

Why should young people care, saddled with debt from university fees and struggling to get a foothold on the housing ladder? Because dementia is a timebomb the devastating effects of which are being felt by families across the land. With cases steadily approaching the one million mark, it’s time for solidarity across the generations. We all pay for education, whether or not we have children. Whatever solution is found for social care in the future, it must be earmarked and include the principle of “we all help one another”.

Anne Penketh is a journalist and author

‘The spark will ignite’: how poetry helps engage people with dementia

With lifted feet, hands still / I am poised, and down the hill / Dart, with heedful mind / The air goes by in a wind

Stephanie Brada reads the Henry Charles Beeching poem Going Down Hill on a Bicycle to a group of residents at a care home. They read along with her, some mouthing the words, others silently following the print-outs on their laps.

“Michael, did you ever have a bike?” Brada asks one of the men sitting across from her.

“Yes,” he replies. “I rode it to work.”

This might be unremarkable in another setting, but the 10 participants of this reading group at Stapely care home in Liverpool all have dementia. Moments of clarity can be rare. After some discussion of bicycles and riding down hills, another poem is read – My Grandmother’s African Grey by Matt Simpson. Unprompted, another resident starts talking about her grandparents’ parrot.

“She never normally says anything,” Brada says afterwards. “Some have quite severe dementia but if they can see [the poem], they can read aloud.”

More than one million people in the UK are expected to have dementia by 2025, while 70% of people in care homes have dementia or severe memory problems. Despite being one of the main causes of disability in later life , the UK spends much less on treating it than cancer, heart disease and strokes.

A number of innovative techniques have been tried by care homes to engage those with dementia, including virtual reality therapy, opera and standup comedy. Reading poems aloud – or shared reading – can have a significant impact on residents’ mood, concentration and social interaction.

Brada has led shared reading groups at Stapely since 2015 and – with two other volunteers – now runs three groups a week. During each one-hour session, three poems are read aloud multiple times by the residents, and then discussed. Care home trustee Philip Ettinger says staff attend the groups themselves if they can spare the time.

“Staff get a buzz from it,” he says. “It’s a privilege to witness the joy on residents’ faces as they realise they can still get great satisfaction from reading aloud together.”

The groups are the brainchild of Liverpudlian charity The Reader, which first worked with a care home in 2006. In 2016-17 the organisation ran 514 shared reading groups around the country – 15% of which were in care homes or community groups for people with dementia. Other participants might face issues such as mental health conditions, chronic pain, isolation or recovery from substance misuse. Supported by a £850,000 grant from the Big Lottery Fund, The Reader has plans to recruit more volunteers and double the number of shared reading groups around the UK over the next three years.

“Our founder wanted to get literature out into the community where people really needed it,” says Kate McDonnell, the charity’s head of reading excellence. “[For] people with dementia … to find your voice in somebody else’s words is incredibly powerful.”


It was like an electric current went around the room. One lady who’d been hunched over … lifted her head and beamed

McDonnell admits that, initially, there were concerns the model wouldn’t work in a care home setting. Other groups had responded well to novels or short stories, but it quickly became clear that prose wouldn’t be suitable.

“I looked around at all of these puzzled faces,” she says, about reading a short story to the first group. “I had A Red, Red Rose by Robert Burns in my bag. As soon as I started reading, it was like an electric current went around the room. One lady, who had been hunched over in her wheelchair the whole time, lifted her head and beamed.”

Relatives who join in often comment on the impact it can have on their loved ones. “Another time, a lady with quite advanced dementia talked about something that had happened in her life,” says McDonnell. “Her daughter was completely amazed. She said: ‘I thought I’d lost my mum forever, but I’ve just had another glimpse of her’.”

The poetry blows on embers, says McDonnell, “and you never know where that spark is going to ignite”.

Poetry resonates particularly well with those with dementia, agrees Philip Davis, the director of the Centre for Research into Reading, Literature and Society at the University of Liverpool. He has researched the benefits of shared reading in care homes for more than five years and thinks that part of the appeal may be that this generation once learned poems by heart at school. But Davis believes it’s more than that – there’s power in the rhythm, the strength of the language, and the shortness of the attention span required to understand poetry. The shared element of the reading also makes all the difference.

“There’s an active, shared engagement. It’s shared emotion that recreates a small community again,” he says. “People help each other read aloud, and begin to share past memories. The aim is to reach the deeper part [of residents] that are often hidden from themselves and others.”

Care homes can be quite lonely places, Brada adds. “But reading enables conversations, and gives them something to think about other than ‘when’s lunch?’ You could write people with dementia off. Or you could put a poem in front of them to see what happens.”

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