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Found 142 results
  1. News Article
    A woman with dementia was effectively left housebound for the last eight years of her life due to surgical delays, an investigation found. The Public Services Ombudsman for Wales said the individual worried about being "caught short" due to incontinence and it affected her family relationships. Her son complained about the care she received at Glan Clwyd Hospital in Denbighshire, in particular. Betsi Cadwaladr University Health Board has since apologised to the family. Ombudsman Nick Bennett said it was clear there was "significant injustice" in the case of the individual, who was identified in the report findings as Mrs B. The patient's son complained there had been surgical delays for a rectal prolapse issue dating back to 2011, concerns over inpatient medical care provided by an elderly care consultant, and a delayed diagnosis of terminal ovarian cancer during a hospital stay. The ombudsman found that clinical decision-making by colorectal surgeons "was not in keeping with accepted clinical practice". Read full story Source: BBC News, 2 March 2021
  2. News Article
    More than 34,000 people with dementia are estimated to have died from coronavirus in the UK since the start of the pandemic, according to new figures. The condition has been identified in just over a quarter of all deaths due to COVID-19, partly due to the large number of deaths in care homes. Nearly 12,000 care home residents have died since January alone. A coalition of charities, including Alzheimer's Society, Dementia UK, John's Campaign and Together in Dementia Every Day (tide), are now calling for introduction of universal social care – free at the point of use like the NHS – as a legacy of COVID-19. It comes as new figures from the Office for National Statistics revealed that deaths of care home residents, where around 70% of people have dementia, are 30%t higher than previously thought. Nearly 12,000 have died since January alone. The charities also revealed the result of a survey of 1,001 people who care for someone close to them with dementia, demonstrating that the toll of the pandemic reaches further than simply deaths from the virus. More than nine in ten (92%) said the pandemic had accelerated their loved one's dementia symptoms, with a third (31%) reported a more rapid increase in difficulty speaking and holding a conversation, and a quarter (25%) in eating by themselves. Nearly a third (32%) of those who lost a loved one during the pandemic thought that isolation/lack of social contact was a significant factor in that loss. The Alzheimer Society and Dementia UK said their helplines had been flooded with calls from relatives reporting how quickly their loved ones were deteriorating. Read full story Source: The Independent, 1 March 2021
  3. Content Article
    In this blog, published on the Alzheimer's Society website, Sue Hansard reflects on the lessons she learnt from living with and caring for her mum who had Alzheimer's disease and passed away two years ago. She shares her perspective to honour her mum, celebrate their relationship, and help others affected by dementia.
  4. Content Article
    Emerging evidence indicates that there has been an increase in the prescription of antipsychotic medications for people living with dementia in care settings during the COVID-19 pandemic. In this blog, Patient Safety Learning explores the patient safety concerns relating to the use of antipsychotic medications for people with dementia and suggests areas for further investigation and action.
  5. Content Article
    This good practice guide was been developed in consultation with an advisory group of leading clinicians specialising in dementia. It aims to provide evidence-based support, advice and resources to a wide range of health and social care professionals caring for people with dementia who have behavioural and psychological symptoms. It has been designed to be a practical, informative tool, with an emphasis on alternatives to drug treatment.
  6. Content Article
    Antipsychotic drugs are used to treat agitation, aggression, and psychosis in dementia when alternative strategies have failed. Their use has been reduced because of concerns about safety and limited efficacy. Drawing on data that the NHS publishes on a monthly basis on patients registered with a dementia diagnosis in England, this article considers evidence of an increase in antipsychotic prescribing to people with dementia during the COVID-19 pandemic.
  7. Content Article
    In this blog for CNN health, Blake Ellis and Melanie Hicken discuss the exponential increase in the prescription of the drug Nuedexta to care home residents with dementia in the US. A CNN investigation found that the number of Nuedexta pills dispensed to care home facilities increased by nearly 400% in four years, prompting concerns that it is being inappropriately prescribed. The drug is designed to treat a rare disorder called pseudobulbar affect (PBA) which occurs in only 5% patients with dementia. State regulators have found doctors inappropriately diagnosing nursing home residents with PBA to justify using Nuedexta to treat patients whose confusion and agitation make them difficult to manage. Analysis by CNN also found that nearly half the Nuedexta claims filed with Medicare in 2015 came from doctors who had received money or other perks from the manufacturer.
  8. Content Article

    John's Campaign

    Sam

    Sam posted an article in Dementia

    Dr John Gerrard was a doctor and a business man, and diagnosed with Alzheimers in his mid seventies. It was a slow decline, that sped up when he was ill or upset, for ten years. Then, at the start of February 2014, he went into hospital. He had infected leg ulcers which weren’t responding to antibiotics. The hospital had a norovirus outbreak which meant visitors weren’t allowed at all. He was there for five weeks. John went in strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. He was able to feed himself, to keep clean, to have a good kind of daily life. He came out skeletal, immobile, incoherent, requiring 24-hour care and barely knowing those around him. His family are sure that if he had not spent that time alone, without them, he would not have descended into such a state of deep delirium. Having someone with you - someone who you love, who you know, whose face you know (be they your carer, your family, your friend, your lover) - helps keep you tied to reality, to life, to sanity. John died in November 2014. His story, however, is still repeated. Far too many people die cut off from the people who care for them. Far too many places have dangerously over-restrictive policies (both predating and during the present pandemic) preventing people from being with people who need them. In the wake of his death, John’s daughter, Nicci Gerrard, cofounded John’s Campaign with Julia Jones, whose mother, June, also lived well with dementia (both Alzheimer’s and vascular) for many years before her death in 2018. John’s Campaign is June’s Campaign, is Everyone’s Campaign, for none of us should be blocked from our best, most special friends, family or carers.
  9. News Article
    The government is facing criticism over its guidance on safe visits to care homes in England. Labour and a number of charities have described the suggestions, including floor-to-ceiling screens, designated visitor pods and window visits, as impractical. Alzheimer's Society has said it "completely misses the point". Justice Secretary Robert Buckland told BBC Radio 4's Today programme the guidance was "non-exhaustive". The updated government advice, which came into effect on Thursday, says care homes - especially those which have not allowed visits since March - "will be encouraged and supported to provide safe visiting opportunities". Labour's shadow care minister Liz Kendall said many care homes would not be able to comply with the government's requirements which meant "in reality thousands of families are likely to be banned from visiting their loved ones". She said instead of suggesting measures such as screens, the government should "designate a single family member as a key worker - making them a priority for weekly testing and proper PPE". Kate Lee, chief executive at Alzheimer's Society, said: "We're devastated by today's new care home visitor guidance - it completely misses the point: this attempt to protect people will kill them." She said the pandemic had left people with dementia isolated and thousands had died. The guidelines "completely ignore the vital role of family carers in providing the care for their loved ones with dementia that no one else can", she added. She said the "prison-style screens" proposed by the government with people speaking through phones were "frankly ridiculous when you consider someone with advanced dementia can often be bed-bound and struggling to speak". That view was echoed by Caroline Abrahams, charity director at Age UK, who said she was "acutely aware" that the methods being sanctioned were "unlikely to be useable by many older people with dementia, or indeed sensory loss". Read full story Source: BBC News, 5 November 2020
  10. News Article
    An NHS trust has offered an unreserved apology to an elderly patient and his family after they accused hospital staff of restraining him 19 times in order to forcibly administer treatment. East Kent Hospitals University NHS Foundation Trust admitted that care for the man, who has dementia, “fell far short” of what patients should expect. The 77-year-old had been admitted to the William Harvey Hospital last November for urinary retention problems, according to a recent BBC investigation. In February, The Independent revealed that a police investigation had been launched into an alleged assault against an elderly man at the hospital after nurses and carers were filmed by hospital security staff holding the man’s arms, legs and face down while they inserted a catheter. A whistleblower told The Independent that the incident was being covered up by the trust and staff were told: “Don’t discuss it, don’t refer to it at all.” On Wednesday, the trust said its investigation had found a failure to alert senior medics to the difficulties being experienced in caring for the patient. Changes to dementia care including ward reorganisation, training and recruitment are underway, said a spokesperson, who added: “We apologise unreservedly to the patient and his family for the failings in his care, this fell far short of what patients should expect.” Read full story Source: The Independent, 14 October 2020
  11. Content Article
    For months, Trevor has been unable to visit his wife, Yvonne, who lives in a care home. In this blog, published by the Alzheimer's Society, Trevor calls for assurance from Government that they will consider the needs of people living with dementia, like Yvonne.
  12. Content Article
    Loneliness and social networks may influence onset of Alzheimer's disease, but little is known about this relationship in people with Alzheimer's disease. This study, published in Geriatric Psychology, aimed to explore the relationship between loneliness and social networks (social measures) and cognitive and psychopathology decline in people with Alzheimer's disease. The authors concluded that maintaining or developing a close friendship network could be beneficial for cognition in people with Alzheimer's disease.
  13. Content Article
    In the UK, people affected by dementia have been hit the hardest by the coronavirus (COVID-19) pandemic. From the high death rate in care homes, to the significant cognitive decline for people who live in the community, to the rising mental health challenges for unpaid carers, the pandemic has had a severe impact, while exposing our fragmented social care system for all to see. Alzheimer’s Society is the UK’s leading dementia charity, and in this report they bring together evidence from a wide range of sources to shine a light on the impact of COVID-19 on people who have dementia and those who care for them.
  14. News Article
    Tens of thousands of people avoided going to hospital for life-threatening illnesses such as heart attacks during Britain's coronavirus crisis, data has revealed. Shocking figures reveal that admissions for seven deadly non-coronavirus conditions between March and June fell by more than 173,000 on the previous year. Previous data for England shows there were nearly 6,000 fewer admissions for heart attacks in March and April compared with last year, and almost 137,000 fewer cancer admissions from March to June. Analysis by the Daily Mail found that the trends were alarmingly similar across the board for patients who suffered strokes, diabetes, dementia, mental health conditions and eating disorders. Health experts said the statistics were 'troubling' and warned that many patients may have died or suffered longterm harm as a result. Gbemi Babalola, senior analyst at the King's Fund think-tank said: "People with some of the most serious health concerns are going without the healthcare they desperately need. Compared with the height of the pandemic, the NHS is seeing an increase in the number of patients as services restart, and significant effort is going into new ways to treat and support patients." "But the fact remains that fewer people are being treated by NHS services." Read full story Source: Daily Mail, 13 September 2020
  15. Content Article
    Chris Maddocks has dementia and on 28 July, after suddenly becoming unwell, she was admitted to her local hospital. She shares her experience of being in hospital and explains how small things can become much bigger for someone living with dementia. She hopes by sharing that this will help others who may be admitted in the future.
  16. News Article
    A dementia charity is seeking a judicial review of the government guidance on care home visits. John's Campaign says many care homes in England are still refusing regular face-to-face visits, often essential for people with severe dementia. Dr Angela McIntyre, a retired doctor backing the campaign, has not seen her 92-year-old mother since March. A Department of Health spokesman said: "We know limiting visits in care homes has been difficult for many families." He added: "Our first priority is to prevent infections in care homes, and this means that visiting policy should still be restricted with alternatives sought wherever possible. "Visiting policies should be tailored by the individual care home and take into account local risks in their area." But John's Campaign believes the guidance does not take into account how important visits from family members are for dementia patients and believes it could be in breach of the law. Read full story Source: BBC Health, 3 September 2020
  17. Content Article
    Despite the increasing policy focus on integrated dementia care in the UK, this paper published in Health and Social Care in the Community, argues that little is known about the opportunities and challenges encountered by practitioners charged with implementing these policies on the ground.
  18. Content Article
    Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study from Giebel et al., published in Aging and Mental Health, was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Fifty semi-structured interviews were conducted with unpaid carers. The study found that PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.
  19. Content Article
    This resource, from NHS Education for Scotland, has been designed for acute general hospital staff to help them develop their abilities in supporting people with dementia, their families and carers. It will help you develop the knowledge and skills set out at the ‘Dementia Skilled Practice Level’ of Promoting Excellence: a framework for all health and social services staff working with people with dementia, their families and carers.
  20. Content Article
    Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community.
  21. Content Article
    Most people experience anxiety at some point in their life, but this may be more acute for a person with a learning disability or autism who then develops dementia. If a person has a history of being anxious or of living with a condition, particularly conditions like OCD (Obsessive Compulsive Disorder), phobias or panic disorders that makes them anxious, developing dementia may then make that worse. The person's communication skills may have diminished due to their dementia, leaving them frustrated at being unable to express themselves and anxious about the consequences of this.
  22. Content Article
    In this case study, Angela gives us a first person account of her life, detailing her family history, life with her husband, her interests and her healthcare, including her recent diagnosis of dementia. Nicola, who has supported Angela with her diagnosis, reflects on the importance of telling Angela about the diagnosis and the support needed moving forward.
  23. Content Article
    This is Alison’s Story. The charity MacIntyre supports Alison. She has Down’s Syndrome and a diagnosis of dementia.  Her story is one of relationships and the emotional impact that dementia can have on friendship. Alison has a really close relationship with Rachel, her best friend who she also lives with. In this case study you will hear: who Alison is how she received her diagnosis of dementia a reflection on Alison's diagnosis by her support manager.
  24. News Article
    Relatives of care home residents with dementia should be treated as key workers, leading charities say. In a letter to the health secretary, they write that the care given by family members is "essential" to residents' mental and physical health. They argue the current limits on visitors have had "damaging consequences" and they want visits to resume safely, with relatives given the same access to care homes and coronavirus testing as staff. Signed by the bosses of leading charities including Dementia UK and the Alzheimer's Society, the letter calls on the government to "urgently" address what it calls the "hidden catastrophe" happening in care homes. The charities say that this "enforced separation" has caused a "deterioration" in residents' mental and physical health, particularly for those living with dementia - who make up more than 70% of the population of care homes. Read full story Source: BBC News, 9 July 2020
  25. Content Article
    Lewis Hornby had a problem: his grandmother, who suffers from dementia, wasn’t drinking enough water, causing her to get severely dehydrated. In this TEDx Talk, Lewis shares his sweet, and potentially life-saving, solution. Lewis is a recent graduate of the Innovation Design Engineering program at the Royal College of Art and Imperial College London. His Jelly Drops design has received multiple awards for design engineering and social impact.
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