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:
LeBlanc: Living alone with dementia (Max Wallack @puzzlestoremember)
There is an overwhelming number of elderly people living alone with some form of dementia. The truth is we never will get an accurate head count because so many senior citizens live beneath the radar, and alone, trying to fend for themselves. Sadly, even some of their own family members ignore the situation or are wedged in denial until their loved ones become seriously ill or injured. Regrettably, it often takes a tragic occurrence for people to notice something is seriously wrong.
Taking Care of Mum: A Son’s Journey (@ASAging)
The role of caregiver caught me by surprise. I have worked in the field of aging since 1977, but when I stepped into the caregiver role, fear and ignorance overwhelmed me, and I felt unprepared
Being in hospital, especially if you are in for months on end and in isolation can be very lonely. I really miss my cousins, my friends, going to school, getting out and about and Charlie Dog. But with Twitter I can:-
@Adsthepoet Brit Writer & multi award winning poet Writes by blinking. On IOS HAPPY LIST 2013; @EduzineGlobal Poetry Editor & Ambassador; @Readwell Young Ambassador
12th to 18th May was dying awareness week:
Death is a difficult topic most of the time to confront, mostly because understandably we do not want to face our own mortality. As we get older we all come face to face with the end of life, whether it be our parents, relatives, friends and family. Dying awareness week means different things to different people. To me it means the time to reflect on the lives of those who have passed, the moment of their passing and the meaning of life, its whole, its dark edges and its beauty. Life is beautiful and death is a part of this beauty. But a reflection of death is also a reflection on life and the duty of mankind to respect the rights and lives of all human beings.
See Dying Matters – http://dyingmatters.org/YODO
Within roughly 72 hours of the end of their lives, many dying people begin to speak in metaphors about a journey.
Often, they haven’t said a word in days — then suddenly they want to know where their train tickets are, or ask for hiking shoes or tide charts. Some demand their coats; others inquire about the bus schedule.
Five things I wish I knew when my Dad was dying of cancer (George Blogs)
Life Before Death (The Guardian)
This sombre series of portraits taken of people before and after they had died is a challenging and poignant study. The work by German photographer Walter Schels and his partner Beate Lakotta, who recorded interviews with the subjects in their final days, reveals much about dying – and living.
We only get one chance to have our dying wishes met, which is why it’s vital to talk, plan and make arrangements for the end of life – before it’s too late.
And of course the short but bright light of Stephen Sutton’
Now studies of the neurological differences between meditators and non-meditators, and studies of immune cell aging via telomere length in meditators and non-meditators, show that meditation can also affect the way we age.
From the Dementia Alliance Blog 14 May – you have to read this
I spent nine years sitting at home ready to die, after all the neurologist had given me a life expectancy of one to two years, and I had followed his suggestion of getting all my affairs in order. Withdrawal, isolation, apathy and agoraphobia had set in, whether this was due to my diagnosis or my loss of interest in life has become obvious to me.
I believe strongly in our vision, “a world where a person with dementia continues to be fully valued”. I am a living example of what happens when you take away the value from one’s life. I am also an example of the wonderful things that can happen when you take that value back. Dementia Alliance International is the vehicle to a better quality of life for each of it’s members who wish to live in a world where they are participants, not spectators.
Has Alzheimer’s Research Been Wrong for 20 Years? (Alzheimers.net)
Alzheimer’s: A ‘memory suitcase’ helps dementia (The Telegraph)
As dementia progresses, short-term memory and cognitive skills diminish,” says Carol. “But patients often return to long-term memories of childhood and growing up. The House of Memories programme supports and stimulates these memories, and makes the dementia journey a bit more bearable for everyone.”
“Will you help me, please?” (D4dementia blog)
As a nation we have to demand better for our loved ones. As professionals we have to find a way to deliver better care. And as the majority of good social care providers would say to the minority who are failing: If you can’t deliver a service that is safe, caring, effective, responsive and well-led then go into another sector, far away from the care of vulnerable people.
Trouble with the language (D4dementia blog)
How we talk about dementia, and people with dementia, is a thorny issue. It is easy to be accused of being politically correct, or losing sight of the real issues by getting hung up on the language we use to describe them, but whilst I would be the first to admit that there is a fine line between being respectful and pedantic, looking at the way we talk about dementia and people with dementia is important to shaping viewpoints, breaking down stigma and improving dementia care
Palliative in Practice (a new blog)
Young people are proving adept at grasping dementia. They get that it is not a normal part of ageing, and can see how it is possible to live well with it.
They are not fazed by the stigma and yet they can mobilise communities into achieving positive outcomes.
England’s schools, educators, local communities, health and social care planners amongst others must do more to embrace, support and promote our trendsetting young dementia ambassadors.
Sustaining the steady flow of graduating dementia friendly generations must occupy central place in all current and future English dementia strategies
Another very well written story from Pippa Kelly – The Power of Stories
As she talks – fluently, with confidence – the camera pans onto photos of her younger self, in nurse’s uniform and cap, and we begin to get a sense of who she is.
Described as “Powerful beyond words” by journalist and Pulitzer Prize finalist Richard Reeves, “I Remember Better When I Paint” was filmed in North America and Europe and shows Alzheimer’s patients focusing and reconnecting as they paint and visit artistic venues such as the Louvre in Paris, the Art Institute of Chicago and New York City’s Big Apple Circus.
So lately I’ve taken to confronting them, with half-joking questions like, “Would your disabled bag mind if I sit down?” Or even with a more direct message: “Hi, I’m Justine, I have MS and I really need a seat. Given that this gate is totally full, I wondered if I could trouble you for a seat in this area?”
My disappearing world (by Kate Swaffer) – A must read!
My name is Kate Swaffer, I have a younger onset frontal temporal dementia, and I am here to tell you my deeply personal story.
MAREP video series offers new hope for those living with dementia (University of Waterloo)
Produced by MAREP and directed by Montreal-based Chris Wynn, A New Voice: living well with dementia, follows Wighton as she meets three individuals living with dementia and learns the tools and strategies they use in their everyday lives.
And some health related Alzheimer and Dementia related articles, research etc
Alzheimer’s is caused by plaques and tangles in the brain, right? Wrong, says a group of researchers who believe that focusing on these abnormal proteins is keeping scientists from investigating other potential causes.
It’s so important to provide the full story when media spins research like we saw with this recent publication. The mission is to light the single candle and, while not cursing the darkness, reveal how misguided are the ongoing efforts to castigate and medically remediate parameters that may actually be doing no harm.
In this paper, we highlight how an excess of dietary carbohydrates, particularly fructose, alongside a relative deficiency in dietary fats and cholesterol, may lead to the development of Alzheimer’s disease.
Your “Healthy” Diet Could Be Quietly Killing Your Brain (Psychology Today)
New Era for Alzheimer’s? (Psychology Today)
The hard truth about Alzheimer’s drugs (Consumer Reports)
In this paper, we issue a call for stronger advocacy for home care and improved collaboration and resource equity between institutional care and community care.
Canadians share their stories about life with dementia (CBC – The Current)
The power of technology for people with dementia (Kate Swaffer)
For me, it is a space for dementia liberation, and occasionally I do feel fearful for the time I may not be able to use my trusty little laptop or iPad, as I could not live well without it. It will throw me fully into my disappearing world, into the downward spiral of dementia. And yet, it will definitely keep me focused on living well with dementia, and advocating for the millions of others with
Eating fish, chicken, nuts may lower risk of Alzheimer’s disease (Science Daily)
Coconut oil – an answer for Alzheimer’s disease? (Alzheimer Society Canada)
A number of articles and research papers on the benefits of coffee
Feeling Forgetful? Have a Cuppa Coffee (National Geographic)
High Blood Caffeine Levels in Older Adults Linked to Avoidance of Alzheimer’s Disease (Journal of Alzheimers Disease)
This Is Your Brain on Coffee (New York Times)
Please understand (Alzeheimer’s Society)
My memories waver on the edge of reason,
Trying to be normal is no longer easy.
A reprieve would be nice for just one day,
But as I wait it never happens that way.
Younger and younger my brain starts to grow,
My emotions jumping to and fro.
My limbs they tremble when I try to walk,
My voice it waivers when I talk.
All the inner pain no one can see,
Stops myself being me.
Please understand what you can’t see
Community of bloggers with Alzheimers/dementia (Dementia Voice)