National Alzheimer’s Awareness Month #Still Here

January is national Alzheimer’s awareness month and this year they are promoting the #Still Here campaign.

http://www.alzheimer.ca/stillhere

 

The Alzheimer Society website has a powerful video and many quotes.  I encourage you to take a look.

For me, it was a reminder, that people live with dementia. People with full, rich lives. People who garden, shop, write, cook, dance.  People with diverse ways of spending their time. For me the # Still Here Campaign is a powerful reminder for us as occupational therapists to focus on all the occupations that bring richness to a persons life.  Not just the ADLs and I-ADLs; although they are important too :).

This campaign has inspired me to talk for a little longer with my patients about what brings value, what is important, what brings pleasure and how we can make it happen, how we can modify, adapt and enable.

Let us remember to see the person first.  # Still Here.

 

 

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CBC Radio “Spark”: Featuring Sylvia Davidson

Listen to this interesting episode of Spark featuring Sylvia Davidson discussing the use of technology for individuals with dementia.  Very interesting subject matter and a look at how technology may impact, and likely innovate, dementia care in the future.  Exciting times!

http://www.cbc.ca/radio/spark/302-dementia-dumpster-diving-driverless-cars-and-more-1.3347851/dementia-is-not-an-individual-s-disease-it-s-something-that-can-tear-families-apart-1.3347854

Spark goes to DementiaHack, a hacakthon with a goal to come up with tools and technologies that can be of practical benefit to people with dementia and their caregivers.

The Globe and Mail – Investigative Series on changes to the homecare system in Ontario for older adults

Have a read of these recent articles in the Globe and Mail on the topic of changes to homecare services in Ontario for older adults.

http://www.theglobeandmail.com/news/national/no-place-like-home-investigating-ontarios-home-care-shortcomings/article25409974/?utm_source=Shared+Article+Sent+to+User&utm_medium=E-mail:+Newsletters+/+E-Blasts+/+etc.&utm_campaign=Shared+Web+Article+Links

http://www.theglobeandmail.com/news/national/ontario-moving-some-seniors-home-care-to-private-agencies/article25487019/?utm_source=Shared+Article+Sent+to+User&utm_medium=E-mail:+Newsletters+/+E-Blasts+/+etc.&utm_campaign=Shared+Web+Article+Links

Sex, Consent, Capacity and Dementia – The Verdict

This is in follow up to the post I made earlier this month regarding the case involving a husband being charged of sexually assaulting his wife with dementia.

Here is the news story from CBS: http://www.cbsnews.com/news/henry-rayhons-former-iowa-state-lawmaker-acquitted-of-sexually-abusing-wife-who-had-dementia/

In this case, he was acquitted of the charges.

But the case raises the serious questions; in particular, when is a person deemed no longer capable of consenting to sexual acts due to cognitive impairment related to dementia.

This question of capacity and consent can be related to multiple decisions that face people every day – real estate, finances, travel, living arrangements etc.  Consent and capacity are so integral to participation in everyday life activities and occupations. I believe we as occupational therapists need to feel comfortable discussing this domain of practice…..

What do you think? Do you feel equipped to educate / assess / counsel /discuss this area?

Let us know your thoughts.

RE: The CBC’s Marketplace Investigation on Brain Training

I watched the episode tonight.  It was interesting and somewhat disappointing to learn that games such as Lumosity have no proven value for people with dementia.

I realize however, that this and similar products are used in rehabilitation programs, particularly in Neuro rehab.  I am curious if anyone has experience using this type of technology with the dementia population….What was your experience?

Here is the link from the CBC website regarding the results of the Brain Training Investigation:

http://www.cbc.ca/news/health/brain-training-games-no-proof-they-prevent-cognitive-decline-1.3025212

I particularly liked the scene with the woman with early onset Alzheimer’s who was playing Settlers of Catan (a boardgame) with her husband – she pointed out that this type of brain training (the old school style 🙂 has a social element, an interpersonal piece that is dynamic and is also very valuable – good food for thought.

Sex, Consent, Capacity and Dementia

All of these topics are complicated on their own.  Put them together and it is staggering.  It is also something very important to consider, especially with the growing dementia rates in Canada at present and in the years ahead.

In the news this week there has been lots of coverage of the case in Iowa of a husband being charged with sexually assaulting his wife who was living in a nursing home and had been deemed incapable of consenting to sexual acts.

Please take some time to look at the links below and share your thoughts about this complicated area…..

The CBC’s  – The Current covered the story this AM: http://www.cbc.ca/player/Radio/The+Current/ID/2663295708/

They also posted this link to a TED Talk on Sexuality and Dementia: https://www.youtube.com/watch?v=nCHyNHk_O_c

Coverage of the case by the Washington Post : http://www.washingtonpost.com/news/morning-mix/wp/2015/04/07/in-an-iowa-courtroom-an-astonishing-case-of-sex-and-alzheimers/

Let us know, what you think?

“Still Alice”

I loved the book by Lisa Genova, so I was concerned the movie wouldn’t do the book justice, but I am happy to say it does.

Spoiler Alert 🙂

It tells the story of Alice, a 50 year old linguistics professor who is diagnosed with early onset Alzheimer’s Disease.  It painfully displays the rapid progression of the disease and how it unfolds in her life.  It brings to life the symptoms that we so commonly discuss: word finding difficulties, getting lost in familiar environments, difficulty recalling recent or scheduled events, misplacing common objects etc.  We see Alice’s coping strategies; the sticky notes, the highlighter, the blackberry list of questions, the word games and tests and the humour to deflect from the things she just can’t remember. We can all relate to Alice; she is a colleague, a friend, a mother, a wife.

Many things struck me about this movie.  In particular, the progression of the disease is largely displayed by Alice’s facial expressions and shifts in her tone of voice; you feel her anxiety when she becomes disoriented while jogging, her embarrassment when she can’t find the bathroom and her sadness at her husband’s inability to discuss the future or live in the present.  She provides an unforgettable glimpse into the lived experience of Alzheimer’s when she eloquently presents at an Alzheimer’s conference.  You also see what we are told remains when the disease progresses; the importance of non-verbal communication, connection and love.

This movie got me thinking about many things:

-the ethical complexities of the genetic nature of early onset Alzheimer’s disease, to test or not to test?

-the challenges of family dynamics in coping with the disease (Alice’s family members have wildly varied responses to her illness)

-the importance of planning for future care in the early stage of the disease when you are able to participate and direct

– caregiver burden and burnout

– the financial costs of care, Alice is financially secure, how do people manage without such an income?

I would love to hear what other people thought of the film…….here’s the trailer if you haven’t already seen it……

https://www.youtube.com/watch?v=ZrXrZ5iiR0o

Reflections on “The Wanderers” article…..

The Toronto Star article posted last week entitled “The Wanderers” is an excellent read – the personal stories are very powerful and highlight the day to day caregiving challenges for individuals with dementia.  The article may be helpful to caregivers and families dealing with wandering issues – sometimes it helps to know you are not alone.

The article reinforced how common an issue wandering is – and reminded me of the news story I had heard just the week before about  a “Missing 76 year old woman with dementia found safe”.

http://globalnews.ca/news/1776288/search-on-for-missing-76-year-old-woman-in-Vaughan/

In thinking and researching more about wandering – how to prevent it – how to manage it when it happens – how to approach a wanderer – I came across this great resource from The Alzheimer’s Society of BC.  See the link below for their: Wandering Information Kit – it has practical tips for managing this challenge –

Take a look:

http://www.alzheimerbc.org/getdoc/6e567132-7e41-46fb-92f0-54f5f32948e0/Wandering-Information-Kit.aspx

CBC Radio – ‘The Current’ – Special Series: Diagnosis Dementia – May 2014

In May 2014, the CBC Radio program ‘The Current’ aired an interesting series entitled “Diagnosis Dementia”.  This link features Canadians from all across the country who called into the program to share their experiences of living with dementia.

http://www.cbc.ca/thecurrent/episode/2014/08/22/canadians-call-in-with-their-dementia-stories/

“We spoke with people who have received the diagnosis; we visited a long term care facility that’s on the cutting edge of care; we heard the latest science behind the disease; and we’ve heard from families consumed with caring for a loved one. It all culminated with a phone -in, when we heard from people across the country. ”

Anna Maria Tremonti was joined by Mary Schulz, the Director of Information, Support and Education at the Alzheimer Society of Canada and Dr. Carmela Tartaglia, a cognitive neurologist at Toronto Western Hospital.