"Well-Being with Dementia: Help, Hope and Inspiration"

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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NF52
Support Team
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Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

"Well-Being with Dementia: Help, Hope and Inspiration"

Post by NF52 »

Aligned with our own mission statement that focuses in part on "supporting APOE-ε4 carriers and their loved ones", here is a new resource:

Pathways to Well-Being with Dementia: A Manual of Help, Hope and Inspiration was written by people LIVING with diagnoses of AD, vascular dementia, LBD and FTD, and by professionals focused on supporting those with these diagnoses.
It's free from the Dementia Action Alliance a non-profit whose mission is "creating a better society in which individuals and families can live well with dementia without stigma and misperceptions through advocacy, education, empowerment and support."

The DAA strongly believes in prevention, with a section on strategies that could prevent up to 40% of cases of dementia that are consistent with the Primer and others. The real benefits of this book, however, are:
  • "how-to" for a host of issues. Making "air travel easier" and "managing your stuff" are on my wish list now! Medical Affairs includes far more than drugs, with cannabis/CBD and transcranial magnetic stimulation.; Tech supports gives great ideas on using Siri, Alexa and other tech to stay connected
  • The voices of people "living with Alzheimer's" explains that "
    Individuals living with dementia are agents of their own lives for as long as possible. They are not mere recipients of care. They need support, not pity or control. They also continue to give to others.
    Relationships are reciprocal even as they change over time
    [Ibid, p. 15]
4/4 and still an optimist!
Rainy
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Joined: Thu Jan 25, 2018 2:05 pm

Re: "Well-Being with Dementia: Help, Hope and Inspiration"

Post by Rainy »

Wow, what an impactful, kind and actionable book! I scrolled through the free pdf and then ordered this fairly priced paperback book "Pathways to Well-being with Dementia..." for myself and for my daughter-in-law, who is caring for her father with dementia.
Especially powerful, as well as difficult to balance, is this quote from the book:
"Weighing the dignity of risk over and against the duty of care means honoring the right of a person to make choices, even if those choices may cause harm, such as getting cut with a tool." Note that the book does make a distinction about choices such as driving that could endanger others.

Heartfelt thanks to NF52 for this excellent and timely resource recommendation!
Rainy
E4/E4
"Live your life, live your life, live your life!" Maurice Sendak
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