How to Come Together to Care for a Loved One With Alzheimer’s

“Hey, we’re in this together, so we’re going to do the best we can do.” People often rise to the occasion when news that a loved one has been diagnosed with a disease emerges. And you might be surprised by what your sibling has to say when you listen, she says. “Sometimes building strong relationships through communication can get better, even when the disease is getting worse.”
Stories from siblings who have done it and helpful take-home tips. Read the full article at:  How to Come Together to Care for a Loved One With Alzheimer’s

I wish I had known before I started caregiving….

This is a re-post from caring.com, and an excellent article where caregivers reflect back on what they wish they had known before caring for their aging parents.

By , Caring.com senior editor
June 06, 2014

Looking Back on Caregiving

6 Things I Wish I Knew Before I Cared for My Parents

You’ve heard the expression “hindsight is 20/20,” and when it comes to family caregiving, it absolutely applies. Get any group of midlife adults together and you’ll hear caregiving “war stories” about what they’re facing when it comes to aging parents, and how completely unprepared they feel for what’s ahead.

“We are not prepared for this situation as a culture — there just isn’t enough information out there,” says Chicago-based Mary Kay Buysse, director of the National Association of Senior Move Managers (NASMM), who has had many years of experience in helping older adults make changes to their living situations. “People are blindsided when suddenly there’s a crisis and Mom needs help and they’re completely in the dark as to what’s available and how to find it.”

To help you navigate this process with more insight, we’ve put together tips from experts and fellow caregivers on what they know now that they wish they’d known when they started the process of finding a safer situation for Mom and Dad. Having been there, done that, they have a wealth of wisdom to pass along to help you learn from their mistakes.

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From the Director of Dementia Adventure

I came across this blog post on the Whose Shoes? blog (a suggested read on personalization in health and social care, by the way). Neil Mapes is the director of Dementia Adventure, which is pretty close to one of my ideas for normalizing dementia in tourism and creating safe places for people with dementia to go with their families on vacations. It’s a good interview with him and about the importance of his company, Dementia Adventure. By the way, Neil, if you are looking for a new colleague, feel free to contact me…… 😉

In the shoes of … Neil Mapes | Director | Dementia Adventure CIC

Happy New Year everybody. #DementiaChallengers are on a roll for 2013, determined to speed up the pace of positive change for people living with dementia and their carers and improve quality of life. And what a refreshing start to the New Year we have here…!

This guest blog is from Neil Mapes, Director of the innovative and award-winning ‘Dementia Adventure’. I am delighted to be able to include this contribution to our ‘in my shoes’ series, looking at dementia from different perspectives. I am a big fan of Neil’s “can do” attitude – it takes a pretty special person to plan sailing holidays for people with dementia in our risk-averse, increasingly litigious ‘elf n’ safety’ society.

We have had over 70 guest posts so far. I have written a couple myself talking about the important role of nature  and specifically the  ‘Let nature feed your senses ‘ project. Neil’s team is making outdoor experiences a reality for more and more people.  I personally feel you do not need mountains of research to know that getting outdoors is GOOD FOR US!

Dementia Adventure is a breath of fresh air for people living with dementia in all senses (literally) – touching, smelling, feeling, tasting and not least hearing the good things that nature has to offer. Most of us take these things for granted – I’d argue that being able to continue going outdoors in later life should be seen as a ‘human right’! 

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Does your workplace allow for caregiving?

A fitting article from Crisis Prevention, where they focus on training and consulting in behavior management and dementia care: Workplace Flexibility | CPI. This article is about a (thankfully) growing trend in workplaces allowing more flexibility for people who are caring for family members.

Why is this important?

According to the American Association of Retired Persons (AARP), caregivers not only contribute from their own personal expenses for care, but caregiving also affects the economy through the paid workforce (L. Feinberg, SC Reinhard, A Hourser, and R Choula, “Valuing the Invaluable:  2011 Update. The growing contributions and costs of family caregiving,” Washington, DC, AARP Public Policy Institute 2011):

  • 58% of caregivers are currently employed either full-time or part-time, balancing work with their caregiving role
  • 69% of caregivers report making work accommodations because of caregiving, including arriving late/leaving early, taking time off, cutting back on work hours, changing jobs, or stopping work entirely
  • Caregivers who live with their loved one are most likely to adjust their paid employment or leave the workforce
  • Not only may they lose foregone earnings and Social Security benefits, but they also can lose job security and career mobility, and employment benefits such as health insurance and retirement savings

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