Here is a round up of some of my more important twitter moments, in date order, on the subjects of care, Alzheimer’s, dementia, life and death and the special individuals who advocate in this area:
@dignityindying tweet of a daily Mail (UK) article –
The medical profession had nothing else to offer her, even with a tumour so large and painful that she looked eight months’ pregnant. The whole process was traumatic.
It started with the doctors who told Gillian – who was very health conscious, had regular check-ups and always believed anything untoward would be caught – that she was being ‘neurotic’ and simply undergoing the menopause when she complained of pains in her abdomen.
A Toronto Star article “Family feud over elder care raises consent and capacity questions“
It is difficult to tell what is exactly happening here and rather than attempting to side with who is right who is wrong in the absence of the facts, let us consider the fact that this does not just involve an woman with Alzheimer’s but also a gentleman who loves her very much and whose interests and needs do not appear to be addressed in the solution. Confusing matters further is the fact that there is much reported abuse of medication for dementia patients in Ontario’s care homes. So what is really happening and is the current process capable of addressing the best interests of the couple, this very important life bond? Alzheimer’s affects the whole family.
Use of antipsychotics soaring at Ontario nursing homes (Toronto Star)
About 100 staff on long-term leave from Hoyles-Escasoni Complex (The Telegram, St John’s)
Come enjoy 10 concerts by an eclectic roster of popular artists, set in the natural beauty of the gardens, rain or shine. Bring your own chair or borrow a stool from our visitors booth. FREE Admission. General seating.
A tweet from Daniel C. Potts, MD @DanielCPotts referenced the following article:
Out of the many precious faculties that dementia robs from a person, artistic ability does not seem to be one of them, a recent study finds. And as the elderly slip into old age, creative expression could be the key that unlocks what mental illness keeps so painfully inaccessible
“Art therapy is helpful for dementia and Alzheimer’s patients,” said Dr. Daniel Potts, neurologist and dementia specialist in Alabama, “because it enables an individual who is having trouble communicating to bypass the language problems they may be having and communicate and express themselves in a different way.”
According to Concerned Friends of Ontario Citizens in Care Facilities, a provincial advocacy group, families caring for someone with advanced dementia are reaching the end of their rope, often waiting up to five months for a long-term care bed
Living Memories Memory Trigger Resources from Disc Digital Services for Care
“Living Memories” involves the creation and delivery of a range of digital video resources that will be designed as “memory triggers” for viewing by patients with dementia and for other older members of the community who grew up in the years before, during and after the Second World War. Unlike personal video, photographs and other memorabilia which may hold painful memories, the generic archive film footage is a “safe” reminiscence tool
Upcoming Mosaic Community events:
@Mosaichomecare community events:13 June, Music to Heal and Café, with AnnMarieBoudreau & Talia Woodbridge, Shops on Steeles and 401
@Mosaichomecare community events: 12June, afternoon yoga workshop for seniors, thanks to Delmanor, Priya Yoga & Pilates
“The hidden type of Alzheimer’s doctors miss” – Roughly 1 out of 10 Alzheimer’s patients—particularly men—may suffer from a subtype of the disease called hippocampal sparing Alzheimer’s (HSP). As the name suggests, this form of the disease spares the patient’s hippocampus, or memory center. But it can cause angry outbursts, vision problems, and other bizarre behavior that often leads to wrong diagnoses and incorrect treatment, according to Mayo Clinic researchers
Alzheimer’s from the inside out, by Richard Taylor PhD (Dementia Alliance International) –
I am at a transitional tipping point.
1. There is such a feeling as kindred spirits among people living with dementia
2. There is such things as universal stigmas engrained in our thoughts and feelings/ but not necessarily in our experiences.
3. These stigmas defy evidence, reasoning and even experience
4. They become the bookends, the dark glasses, the perceptual filters of our living, of our caregivers, of other professionals who interact with us.
5. These stigmas limit, prescribe, and describe how we think, feel and act with and towards each other.
6. Stigmas should be addressed head on.
7. We all must stop perpetuating them, reminding others of them, using them to meet our own needs.
8. The language, the symbols, the words we use are contaminated, intentionally and unintentionally redefined to meet our own needs.
Thanks to a tweet from Revera Inc. @Revera_Inc,
Worldwide, the public narrative around dementia has already begun to shift. Through dementia-friendly campaigns in nations like England and Australia, or cities like Bruges, Belgium or Twin Cities, Minnesota, awareness is building that people living with dementia are a vital part of communities, offer valuable gifts, and can continue to enjoy a full and meaningful life even with their diagnosis.
Palliative or end-of-life services in Canada have traditionally been provided at home until the care becomes so complicated or overwhelming that admission to hospital is required.
“During the course of illness it is not unusual for a person to seek treatment in emergency rooms and/or to be admitted to hospital a number of times until they reach a point when they cannot be released due to the severity of illness or inability of their family to care for them at home,” said Doug Burt, member of the Community Home Support Lanark County board of directors.
While some Canadians die at home, the majority of them spend their last days in hospital. This results in a great deal of stress for patients and families as well as unnecessary use of costly hospital beds for people who could be better managed at home or in a hospice.
Baycrest launches a website for seniors struggling with late-life depression and suicidal thoughts – both of which are not part of the natural aging process and yet they are much more common than most would presume. It is hoped that this new resource will combat the stigma surrounding mental illness.
The Canadian Medical Association (CMA), in partnership with Maclean’s, will host a town hall in Mississauga on May 27 as part of its National Dialogue on end-of-life care.
Launched in February, the National Dialogue consists of a series of five public town halls across Canada focusing on physician-assisted dying, advance care planning and palliative care.
From a tweet by Alzheimer’s Society @alzheimerssoc, a link to a number of articles produced in the UK Independent Newspaper and available from the Dementia Awareness.co (UK) website:
A tweet from Aging Expert @JudiBonilla noted the following link
“Talking about end-of-life issues can be very emotionally wrenching. But it’s an important issue. I mean, we talk about all other things in life, why can’t we talk about what we want toward the end of life?”
Braunstein says that physicians haven’t been well-trained for these conversations, and that they can take some time. He noted that an earlier version of the Affordable Care Act provided payment for this type of conversation, but that was later stripped out
A study in the New England Journal of Medicine reports that nearly one in five nursing home residents with advanced dementia experiences burdensome transitions in the last 90 days of life. This includes moving to a different facility in the last three days of life or repeat hospitalizations for expected complications of dementia in the last 90 days of life.
“Ultimately, all of these problems are signs of care gone awry. The best care for a patient with advanced cognitive impairment near the end of life is often to maximize comfort. The burdens of hospitalization usually outweigh the benefits — Joan Teno.”
“Such patterns of transitions are burdensome, particularly since the overwhelming majority of family members state the main goal of care is comfort,” said study co-author Joan Teno, professor of health policy and practice at the Alpert Medical School of Brown University and a palliative care physician. “These transitions reflect the inefficiency of our health care system. Similar outcomes could be achieved by keeping these patients in the nursing home setting.”
From a tweet by Max Wallack @PuzzlesRemember
“Dementia is not treated in a holistic manner,” says Kyle Allen, DO, vice president for clinical integration and medical director for geriatric medicine and the lifelong health division for Newport News, VA–based Riverside Health System made up of seven hospitals, a medical group, and a full continuum of care for aging patients. “Geriatricians who’ve had the training understand that this is a family illness. This is not just an individual.”
Research by the Campaign to End Loneliness shows that more than half of over-75s now live alone with many saying that television is their main source of company.
One in 10 reports having contact with family, friends and neighbours only once a month. It equates to more than 800,000 people in England being classified as “chronically lonely”.
D4 Dementia blog spot did a series of 7 min blogs for Dementia Awareness week.
From a tweet by PublicAgenda @PublicAgenda, an online collection of 80 documents on end of life care:
Teaching doctors when to stop treatment (Washington Post) from a tweet by André Picard @picardonhealth
Physicians are trained to make diagnoses and to treat disease. Untrained in skills such as pain and symptom management, communication about what to expect in the future and achievable goals for care, physicians do what we have been trained to do: Order more tests, more procedures, more treatments, even when these things no longer help. Even when they no longer make sense.
“It’s clear to me at least that the majority of people there know that at some level what we’re really saying is this person’s life ought not to continue because the suffering is so unbearable. They are frankly off better dead than alive. It’s a very primitive way of articulating it but that’s the sentiment.”
“So now let’s think of how we can do that most humanely but not break any laws. All I’m saying is the human condition is complex — we fall between the cracks when you’re in that grey zone … it’s never that crystal clear,” said Bereza.
& The debate surrounding palliative sedation (from eHospice)
& from the Guardian UK – Doctors are still not good at talking about dying – seems to be a common theme everywhere.
As today’s publication of the National Care of the Dying Audit for Hospitals shows, while there is evidence that some patients are getting good care in the last few days of their lives, there is also evidence of failings in care which leave patients suffering and families with distressing memories
When dementia happens, it happens to your whole family says 11-year-old Annie (Joseph Rowntree Foundation)
Lots of people think dementia only affects much older people in their 80s and 90s. My Nana was 58.
The day Nana was diagnosed was the day we ALL got it. Families get dementia not just the person with it.
Together is the only way forward. Dementia is a TEAM game.
Nana still looks the same. We still sing in the street, walk Lulu the crazy greyhound, laugh together, feed the birds, dance to the radio and have girly sleepovers where I am allowed to stay up much later than Dad lets me and watch programmes I want to watch, no matter how dreadful.
The liveable lives study: understanding everyday help and support (Joseph Rowntree Foundation) tweeted by Contact the Elderly @contact_teas
The report is part of the ‘Liveable Lives’ project, a major study of low-intensity support in Glasgow, and it focuses on three specific accounts, with many themes for further investigation identified. These include:
- The often blurred nature of the relationship between helping and being helped;
- The iterative and incremental way in which trust develops through relatively small acts of help and kindness;
- The central role of mobility in many accounts of help and support;
- The importance of the physical setting of help – for example, back gardens or stairwells; and
- The relationship between online and offline help and support
My name is not dementia: people with dementia discuss quality of life indicators (Alzheimer’s Society UK)
Following on from the Dementia: out of the shadows report, in which people with dementia spoke out about stigma and the impact that the diagnosis had on their lives, Alzheimer’s commissioned research into quality of life in dementia. The My name is not dementia report presents the findings of the first stage of this project.
Talking Mats® help involve people with dementia and their carers in decision making (Joseph Rowntree Foundation)
This study reveals how Talking Mats, a low-tech communication tool, can help both parties participate fully in discussions about everyday care:
- Family carers reported that Talking Mats made them feel ‘listened to’ by the person with dementia. They also felt that their relative could actually ‘see’ their point of view when using Talking Mats.
- Talking Mats can help people negotiate over day-to-day decisions.
- The mats also offer a way for recording joint views to inform later decisions made with members of the wider support community.
Alzheimer’s Society UK – Home from home report a 2007 report
The government and the care sector should further challenge perceptions of poor practice and promote care homes as appropriate places of care for many people with dementia, rather than residences of last resort. The government and the care sector must work together to improve public understanding of the potential for people with dementia in care homes to enjoy a good quality of life.
People with dementia are not second-class citizens and should be entitled to first-class care. Anything less should no longer be acceptable to them or us. The care home system must be designed around high expectations, through improved inspection and regulation, resource allocation and support from other services. Alzheimer’s Society has long campaigned for quality dementia care in all settings and will continue to do so.
A November 2011 Joseph Rowntree Foundation report, “A Better Life: what older people with high support needs value”.
People with high support needs in the UK are not a homogenous group, and although most are over 85 years old, there is considerable variation across age, ethnicity, health and social care needs, fi nancial status and lifestyle. Little is known about what these people want and value, while negative assumptions are sometimes made about their ability to comment on and participate in decision-making and collective action.
At a glance 65: Better Life for older people with high support needs: the role of social care (Joseph Rowntree Association)
The Joseph Rowntree Foundation has identified seven key challenges to be addressed for older people with high support needs to achieve a better quality of life. Social care has a key role to play in meeting these challenges.
- Old age is not about ‘them’: it is about all of us
- Older people are individuals and they are, as a group, becoming more diverse
- Relationships matter to us whatever our age; we have a fundamental human need to connect with others meaningfully
- Older people with high support needs have many assets, strengths and resources that they can also bring to the development and provision of services
- Whatever our age or support needs, we should all be treated as citizens: equal stakeholders with both rights and responsibilities
- The individual and collective voices of older people with high support needs should be heard and given power
- We need both to innovate and improve existing models
Doctor and writer Kate Granger was the focus of the second ever Dying Matters Annual Lecture on Monday 18 May, marking the beginning of Dying Matters Awareness week.
Kate, a Specialist Registrar in Geriatric Medicine, has incurable cancer. After five gruelling rounds of chemotherapy following her diagnosis with a rare and aggressive form of sarcoma in July 2011, she decided to stop receiving treatment and concentrate on enjoying a good quality of life.
Since then, Kate has written two books, and blogs and tweets extensively about living with cancer and, in particular, her experiences as a patient.
smell can be a fast-track to a person’s past, and losing the ability to pick up scents, which can be an early effect of diseases like Alzheimer’s, can mean losing emotions associated with the smell – with lifetime memories ultimately vanishing forever
before they die, people interpret and apportion cues to their personal identities for those who will survive. They hope to be remembered, for example, as good fathers, competent women, successful businesspersons, creative artists, or peacemakers. “What is being preserved after death is a self-concept which existed during life, was acknowledged by others, and had become a significant aspect of the dead person’s self.”
My Home Life’s vision of best practice is underpinned by an evidence base developed by more than 60 academic researchers from Universities across the UK. Its eight themes identify what best practice in care homes for older people looks like in the 21st century. They are grouped into three different areas: