Twitter round up, week to 1 June 2014

June 3, 2014 in Uncategorized |

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:

Some may feel that many of the topics in this weekly summary are depressing and sad.  That may be, but I find many of these stories not only well written but uplifting and life affirming.  They are most of them about life, the importance of life and about the right to life whatever the circumstance you find yourself in, or as the case may be, the right to end your life.  Much of that which is good in people can be found in the variety of blogs, articles and research I summarise here on a weekly basis and even when we find bad, we find people fighting against it for the rights of others.

From the Alzheimer’s Society (UK) Living with Dementia magazine June 2014 – From Lewy body dementia diagnosis to Dementia Friends Champion

Like a number of people with dementia, the road to a diagnosis was an unfortunately long one for Ken Clasper.

However Ken, now aged 66, decided to use his experience to educate people about life with dementia and have a say in research into the condition.

It was during his work as a university engineer in Oxford that Ken first started to notice that things weren’t quite as they used to be.

From Living Well with Dementia: “Can you live well with dementia and suffer at the same time?”

When the media fires bullets of suffering in their magazines (quite literally), it is not clear who is the suffering by, what they’re suffering, how they’re suffering, when they’re suffering, and why they’re suffering.

Many readers suffer at this lack of clarity.

It’s pretty clear this narrative has got extremely distorted for no clear reason. What do the caring professions or the media have to gain by describing so much suffering?

Person-Centered Care: The New Business Case for Cancer

As a senior program officer for The John A. Hartford Foundation, Amy Berman, BS, RN, has devoted her career to spreading the word about better ways to deliver healthcare. Three years ago, she became her own case study when she discovered she had inflammatory breast cancer, a rare form of the disease with poor odds of 5-year survival. Berman’s story of embracing palliative care and an active life embodies the movement toward “person-centered” care that will become essential as the population with cancer ages. – See more at: http://nursing.onclive.com/web-exclusives/Person-Centered-Care-The-New-Business-Case-for-Cancer#sthash.2kXmLp7A.dpuf

Palliative Care: Life-Changing Support for Those Facing Cancer

In April 2012, Amy published a personal account of her cancer experience, Living Life in My Own Way – And Dying That Way as Well. It starts with what it felt like for her and her mother to hear the words of a difficult diagnosis, and then be catapulted into a whirlwind of appointments with various cancer specialists to discuss treatment options and decisions that had to be made. Throughout, because of her nursing background, Amy was able to stick to her guns in prioritizing person-centered care that included palliative care.

But had Amy not known about palliative care, her story would have played out very differently. She may have instead followed the “standard cancer care protocol” recommended by one oncologist, which would have involved a disfiguring mastectomy offering little or no survival benefit in her particular cancer, followed by a rigorous chemotherapy treatment regimen fraught with side effects – all parts of the “standard” treatment plan that ran completely counter to Amy’s objectives.

From the Dementia Project blog – Diablog Number 1- On Diagnosis

On a warm spring day I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, interaction and meaningful engagement; the “bigger picture” and how people with dementia are represented and treated in society; his views on research; anti-psychotic medication

The next few items are to do with the importance of music and the mind and how music and similar activities have a central role in helping those living with dementia.   There is a lot we do not know about the brain and the many points in which we can access and communicate with it.   Our existence is shaped by a number of different dimensions.

Mysteries of the Mind: Music and the Brain from the Inside Agenda blog

Music: It’s in your head, changing your brain

Levitin points out that many of our ancestors, before there was writing, used music to help them remember things, such as how to prepare foods or the way to get to a water source. These procedural tasks would have been easier to remember as songs. Today, we still use songs to teach children things in school, like the 50 states

Music as a form of self-therapy from the Murray Alzheimer Research and education program

Judy is a person living with Alzheimer’s disease who uses music and singing as a form of therapy and self-expression. Her music serves as a great form of dementia advocacy, as her lyrics reflect the journey through Alzheimer’s. She has an absolutely lovely voice, and I encourage you to check out the sound clip from the interview that features Judy talking about her connection with music and singing one of her songs.

Singing Changes Your Brain (Time)

When you sing, musical vibrations move through you, altering your physical and emotional landscape. Group singing, for those who have done it, is the most exhilarating and transformative of all. It takes something incredibly intimate, a sound that begins inside you, shares it with a roomful of people and it comes back as something even more thrilling: harmony.

Social stigma, music and living well with dementia from Living Well With Dementia

The power of music, especially singing, to unlock memories and kickstart the grey matter is an increasingly key feature of dementia care. It seems to reach parts of the damaged brain in ways other forms of communication cannot.

Organisations such as Music for Life, Lost Chord, Golden Oldies and Live Music have also improved accessibility live musicians, both professional and amateur, most of them trained to deal with the special needs of an elderly, memory-impaired audience.

A nice overview of some of these initiatives is given on the Age UK website.

The Emerging Science of Consciousness: Mind, Brain and the Human Experience – from the Nour Foundation

A set of 4 accessible on line lectures/discussions on:

the complexity of the human brain and how it gives rise to our understanding and experience of the world around us is one of the greatest mysteries remaining in science today. While recent discoveries in neuroscience are providing us with new insights into the workings of the brain, a comprehensive science of the mind is only just beginning to emerge. Moderated by Steve Paulson, Executive Producer of Wisconsin Public Radio’s To The Best Of Our Knowledge, this four-part lecture series brings together leading experts from various fields to discuss how the latest research is challenging our understanding of the very nature and function of consciousness in our daily lives. –

Measuring Quality of Care for Older Adults With Serious Illness (Health Affairs blog)

Especially in serious illness, patients want control over treatment through shared decision-making. Even when there is no cure, most patients still want health care that helps them live longer – but only if they can also get help with function, physical comfort, and attention to family, emotional and spiritual needs.

Health Affairs Blog Series (Palliative in Practice) – this is a very important set of resources.

Health Affairs, the leading journal of health policy thought and research founded through Project HOPE, a nonprofit international health education organization, is currently producing a periodic blog series on palliative care, health policy and health reform.

The posts include adapted essays from the forthcoming book, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, edited by CAPC Director Dr. Diane E. Meier and Dr. Amy Kelley. The book describes current models of delivering palliative care across care settings, and examines opportunities in the setting of healthcare policy reform for palliative care to improve outcomes for patients, families and health care institutions.

Adding End-of-Life Wishes to Your “Bucket List” (UHN Princess Margaret Cancer Centre) thanks to @VirtualHospice

When you are living with advanced cancer, you want to live as fully as you can and make the most of the time you have left. You don’t know how much time you’ve got, but you sense that every moment is precious. So, you may want to create your own “bucket list” and you let it guide you down both old and new pathways.

Dementia Care in Hospitals (RCN Development Program University of Worcester)

The Association for Dementia Studies at the University of Worcester, in collaboration with the Royal College of Nursing (RCN), has published a report on the programme about the role of nurses in dementia care. It investigates the need to invest in nurse leaders and dementia nurse specialists.

Using Person-centred Thinking to implement Dementia Care Mapping –interesting 2010 document

Emily has advanced dementia and was included in a mapping exercise. The mappers observed positive events during her day, for example, when she showed signs of discomfort and pain in her shoulder area, staff recognised this and offered her comfort by gentle massage as well as pain relief medication. Emily’s mood was visibly seen to rise whilst have her shoulder massaged. However, the mappers also observed Emily asking staff on several occasions if she could go out and was told each time she could not. Emily was sat in a large communal lounge and the furthest away from the window.  The room was dimly lit by a low energy light bulb

Scheme for people with dementia helps to trigger memories (The Guardian)

In Ron’s case, it turned out that he took the same bus route to work every day for 40 years. A quick search identified a photo of a building that Ron passed thousands of times during the course of his working life. On seeing this, Ron lit up and started talking about the fun he used to have with his workmates. After only a 30-minute session, he recognised his wife for the first time in six months.

Game your brain: the new benefits of neuroplasticity (Wired UK), thanks to @PreventAD

“I choose not to talk about these things publicly, because I don’t want people to think that if you have 30 per cent of your frontal lobes removed you can expect this kind of recovery,” Merzenich says. “One thing is clear though. Ryan would have never have recovered from such an injury if the human brain didn’t have a remarkable capacity to change.”

My personal experience of an introductory day to ‘Dementia Friends’ Champions from Living Well With Dementia

I went out of curiosity to see how Public Health England had set it up to be delivered by the Alzheimer’s Society. I must admit that I am intensely loyal to the whole third sector for dementias, including other charities such as the Joseph Rowntree Foundation, Young Dementia UK, Alzheimer’s BRACE, and Dementia UK.

Man With Alzheimer’s Proves That Even If The Mind Forgets, ‘The Heart Remembers’ – thanks to @SunriseSrLiving

When police found Melvyn, he was 2 miles from his house and he was resolute in his goal, according to Fox 16. He was going to the store to buy flowers for his wife for Mother’s Day, just like he had done every year since they had their first child.

Federal leadership needed for nursing homes to improve care quality thanks to @EvidenceNetwork

Those living in a regulated nursing home are likely in the frailest condition of their lives, and approaching the end of life.

The individual reasons for entering a nursing home are many, but commonly, residents require intense personal care for an indefinite period of time.

Nursing home residents often require significant assistance because many suffer from chronic conditions that impair their capacity to live on their own.

Residents rely heavily on the nursing home to ensure their protection and well-being.

So it is paradoxical — some would say tragic — that nursing home residents are too often put on drugs they don’t need, which can be dangerous, and may even kill them.

Thanks to @arttherapy Art therapy a ‘gift of accomplishment’ for York retirees

Gloria “Mickey” Kauffman grips a paint brush in her right fist and drags the bristles across a pink piece of paper.

The 78-year-old resident of Country Meadows Retirement Communities in West Manchester Township said she learned to paint before she could walk.

Crippled by polio in 1914, at 6, she learned to use her hands before her feet, she said. She didn’t walk again until she was 9.

Sport and Dementia (UK Dept of Health), thanks to @SCIE_socialcare

Just to reiterate the benefits of memories in helping those living with dementia. 

Recalling great moments of sport can prove beneficial in promoting cognitive functioning, triggering long held memories and providing social activities that can play their part in therapeutic interventions and activities offered to people living with dementia. Singing, dance, craft and arts all offer stimulating topics and hobbies that engage and promote socialisation

My dementia trumpet call (Kate Swaffer) & 17 things never to say or do to a person with dementia

knew Roseann Tenhuen for just five days and yet I’ll never forget her. These were the last five days of her life. (Hammond Care) 

Death is a topic many of us try to ignore but it is a point through which we all must pass.  There are many moving and well written pieces on death, especially those supported by palliative care, that force you refocus on this life event.

Just over two years ago Roseann was diagnosed with a cancer of the blood and bone marrow. Four weeks ago the doctors told her that they had run out of treatment options – she needed to face up to the reality that within weeks her life would be over.

Roseann was told about the Palliative Care Home Support program and embraced it with towering strength, courage and determination.

She was dogged, she was stoic. Through these five unforgettable days she never wavered from her decision to die at home, surrounded by her family. Two daughters had flown in from London. Two of her precious grandchildren were there, as well as other family members and friends who dropped in.  

Specialized Care Urged for Treating Parkinson’s Disease thanks to @AgileAging

Patients benefit most under the care of a neurologist with extra training in movement disorders, backed up by a team including mental health professionals and physical and occupational therapists who can help with the diseases’ physical and emotional toll, advocates say

Jazz drummer gets crowd moving at Vaughan’s Chartwell Valley Vista retirement home

Allan Kowall has been drumming for more than 70 years, but he’s unable to pinpoint exactly what drives his passion for playing music, especially jazz.

“I don’t know. I like it, I can’t tell you anything other than that,” said Kowall, 92, sitting in his bright, airy apartment an hour before his monthly gig at the Vaughan seniors’ residence where he lives

Darce’s Diagnosis: I am neither a victim of dementia nor a hero

I recently had coffee with a learned and younger friend in a cafe on Quinpool Road. We both spotted a guy we knew walking past the window; I remembered his name, my friend couldn’t. This provoked so much laughing we attracted the attention of other customers.

And that’s the way it should be.

It doesn’t mean he has dementia and it doesn’t mean I don’t. That being said, it will be difficult for me to resist reminding him of that episode when next we meet.

A useful event calendar from the Alzheimer Knowledge exchange

Laughter and music better than drugs for dementia patients

A weekly dose of songs and laughs, combined with a daily regimen of jokes and silliness, is replacing psychotropic drugs and anti-depressants given to dementia patients in NSW 

Behavior therapies better than antipsychotics for dementia patients, nurses say

Ecumen, a Minnesota care organization, used behavior modification and other alternative techniques to reduce the use of antipsychotic drugs by 98 percent in 1,200 patients across its 16 nursing homes, saving $200,000 to $350,000 a month in Medicare and Medicaid spending on the medications and making patients more alert and active.


Carers often face difficult and complex choices in the use of medications and restraints when caring for a person with dementia at home or seeking to ensure that the person they care for is receiving the appropriate care in residential aged care facilities. These decisions can be made more difficult because of a lack of information about the effectiveness and potential consequences of these powerful
medications, and a lack of awareness about alternative approaches. In some cases carers are not even being involved in the decision-making process. A study of Sydney nursing homes showed that only in 6.5% of cases was appropriate consent obtained (Rendina et al., 2009).

Pioneering programme reduces need for dementia medication (Guardian UK)

Pearl’s approaches often have a sensory aspect as smells, sounds and touch are frequently associated with fond memories. Rummage boxes, sensory gardens and music sessions are prominent examples of tools used in our programme to help residents recall thoughts and experiences of their lives prior to developing dementia. These practices require understanding of each resident on a personal basis – not everyone shares the same background and what resonates with one person might not with another.

University of Tasmania study finds strong sedatives prescribed at high rate in nursing homes

Alzheimer’s Australia has called on the Federal Government to do more to protect the rights of nursing home residents.

Chief executive Glenn Rees says sedatives and tranquilisers are not an acceptable alternative to quality care.

“This research means there could be as many as 100,000 older Australians being put at risk of a range of side effects, because of our failure to provide appropriate non-medical care,” he said.

Research has shown the main reason sedative and psychiatric drugs are prescribed in high numbers is that doctors tend to overestimate the efficacy of psychotropic medications and are limited in their awareness of the side effects.

Up to 80 per cent of dementia patients in aged care facilities restrained with psychotropic drugs: report

A new study produced by Alzheimer’s Australia suggests up to 80 per cent of dementia patients in aged care facilities are being treated with psychotropic drugs.

The report, to be released today, suggests only one in five dementia patients receive any benefit from taking such medication

Dementia Patients Stay Calm Without Medication

On a recent autumn afternoon, Miss Joyce Bailey, 82, a tiny woman with braided hair, joyfully hummed along with gospel tunes emanating from the headset on her portable music player. The Coler-Goldwater resident, a dementia patient whose voice retains the lilt of her native country of Jamaica, received visitors in a common area whose walls were painted with a green and purple landscape resembling the tropical island. As she chatted with the chief psychiatrist, Dr. Ravindra Amin, she remained cheerful without the use of any medication

Development of an End of Life Tool – I suggest you read the presentation. Thanks to @NiceElderly

Toronto day programs help seniors with dementia (The Toronto Star)

In Toronto, 37 seniors’ day programs accept people with dementia, while eight are specifically for those with the disease, according to the Toronto Dementia Network website, dementiatoronto.org. The programs offer a variety of activities, including arts, music and physical exercise, and some have extended hours, even overnight stays

Members of Centre for Death & Society interviewed on campus radio thanks to @ndccharity

Making old age fun: more buses, play areas … and loos (Guardian UK), thanks to @Age_UK

For six months, two leading charities on ageing issues, ILC-UK and Age UK, have worked with academics, researchers and professionals seeking solutions to the challenges raised by this seismic demographic shift. The report, Making our Communities Ready for Ageing, focuses on three main themes: at home; getting out and about; and ensuring communities offer what older people want

Doctors push for co-ordinated approach to dementia treatment, thanks to Alzheimer Society TO

The rising tide of dementia patients is destabilizing hospital care in Canada, the incoming president of the Canadian Medical Association told a health conference in Whistler Monday.

“The reason your father has to wait nine months for a hip replacement is that the beds are being used by dementia patients,” said Dr. Chris Simpson, a cardiologist based in Kingston, Ont. “That is the single biggest reason why elective surgery wait times are so long.”

89-year-old journalist publishing local paper for past 65 years

The 89-year-old has been the editor and publisher of the local newspaper since 1949, and currently, is actually the only reporter for the 1,000-strong subscriber base. And while he may not have the capability of covering international and even national news, he has his ear on the ground of his town, covering both local events and politics. He and a partner started out as the Shukan Watanoha (Weekly Watanoha) but eventually changed the name to Oshika Shimbun (Oshika Newspaper) when the other man left. He has been able to write about such historic events like the first Miss Watanoha competition in 1950 which showed that the area was coming back to life after World War II; how the town then became a district of Ishinomaki city by 1959; how the 1960 tsunami hit the town after a major earthquake in 1960.

Jim Finkbeiner’s Story (watch the video) – thanks to Alzheimer Society PE

How diversity has changed the way we handle our dead (Toronto Star)

When his father died more than 15 years ago, Hindu priest Pandit Roopnauth Sharma took his ashes down to Lake Ontario. Sharma looked around, made sure no one was watching and placed them in the water.

“I realized there was a lot that was wrong with that,” recalls the spiritual leader of Mississauga’s Ram Mandir Hindu temple and president of the Hindu Federation . Not having a proper place to scatter the ashes — a sacred ritual for Hindus and Sikhs — was “very stressful and very painful.”

That prompted the federation to work with community members, conservation authorities and government officials, resulting in the provincial guidelines of 2009 allowing ashes to be scattered on Ontario’s Crown land and water.

Many patients receiving end of life treatments they don’t want or need (Evidence Network)

Imagine, one day, without any warning, you find yourself in a hospital in a life-threatening situation, unable to communicate. Who would speak for you and make health care decisions on your behalf? That’s a question that all Canadians need to contemplate — but recent studies indicate that most of us have not.

Without sight and sound – loneliness and the deafblind (Campaign to End Loneliness)

Few conditions can be more isolating than being both deaf and blind. Older people with sensory loss can be among the loneliest members of society, feeling marginalised even from the wider disabled community.

Research demonstrates what a problem this is: it is estimated that there will be 489,000 older people with dual sensory loss by 2030. Many of us know older people who don’t hear or see so well. This is no a minority issue. This is a real concern not just for people with sight and hearing loss themselves, but for their families and society as a whole

Dementia Mentors Site Launches June 1st!

Gary and his team envision today’s mentees becoming tomorrow’s mentors. The value of helping others can’t be overstated. We all feel more energized, hopeful, and positive when we know we’ve made a difference to another person. That’s what Dementia Mentors is all about – people helping people. Everyone involved benefits from the program; each life is enriched along the way.

Our Core Beliefs (Dementia Alliance Int)

    • People living with dementia deserve quality of life and appropriate support to live their pre-diagnosis lives
    • Everyone has the possibility of having value every day of their lives, no matter what stage of the disease they are in
    • Well-being (or living well) with dementia is possible
    • People with dementia must be included in all decisions affecting them: nothing about us, without us
    • People with dementia are role models for each other and should learn from each other
    • People with dementia and the wider community must focus on what people with the disease CAN do rather than on what they CANNOT do, through all stages of the disease
    • Language must not devalue people with dementia
    • People with dementia have capacity

‘My friend’s shocking suicide convinced me I want the chance to kill myself with dignity’: Sir Patrick Stewart makes an electrifying and deeply personal intervention into the assisted suicide debate (UK Daily Mail) – thanks to Dignity in Dying.


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