What It’s Really Like to Live with Dementia: Part 1 with Joe Dolan

 

Living with dementia is challenging. But if you’re as tenacious as Joe Dolan, you won’t let that keep you down. Living with a partner battling dementia can also cast a long shadow on life; one that’s full of a lot of unanswered questions and ambiguity about the future. Yet it can also highlight our strengths and ingenuity, and demonstrate that sometimes, we are a lot more resilient than we give ourselves credit for. In this episode, we chat with Joe Dolan and Maureen Barnes, a couple who are experiencing this firsthand and hear about some of the strategies they’ve developed to work with dementia in their life. This will be a 2 part episode, mostly because I had an enjoyable and lengthy conversation with Joe and Maureen; but also because I thought it would be nice to devote an episode to each of them as they share their personal perspectives. We start with Joe, as he reflects on family history; how dementia has affected his relationship; and why he believes maintaining a sense of purpose is the most important aspect of living with dementia.

Joe’s received a little bit of a double whammy in the area of his health within the last 5 years. He was diagnosed with cancer about a year after the doctor told him he had Alzheimer’s. This, of course, had an impact on the mild cognitive impairment he was experiencing. But he attributes his current success in disease management to several factors: he’s maintained a clean lifestyle since his thirties; he’s still quite physically active; and he also uses CBD oil daily, which is inspiring a new family business venture in the works. Hear more of Joe’s story by tuning in to the episode here.

Action Steps:

  1. Don’t just accept the diagnosis and think there’s nothing you can do about it. Be active and specifically, PRO-active. In Joe’s words – “don’t ever just sit and do nothin”. We heard how he remains involved in the business he owned for many years; and that he still does manual labor on the family’s property. Maureen also acknowledged the importance of this hard work in maintaining Joe’s current capacity.
  2. The next point I took home was that sleep is important. Recent studies suggest that sleep plays a role in clearing beta-amyloid out of the brain and even goes further to suggest that sleep deprivation may actually increase the risk for beta-amyloid build-up. And just in case listeners are unfamiliar with beta-amyloid: it is a protein fragment found in our brains. In healthy brains, these proteins are broken down and eliminated.  But in the case of Alzheimer’s dx, beta-amyloid is the main component of the plaque build-up found in the brains of Alzheimer patients. I’ll include the resources I used to explain this in our show notes for you.
  3. Joe also spoke about CBD oil and how it had a positive effect on his ability to sleep well. CBD is a hot area of research right now. if you’re considering using it, I’d encourage you to find reputable sources to review  – and by that, I mean not just news articles or social media posts. Again, we’ll share a few links in our show notes, as well as info on the naturopath doctor that Joe spoke highly of.
  4. Another thing I found very powerful from Maureen and Joe’s point of view was this: you must understand each other’s skill sets – and maximize them. In essence, truly knowing how to best support and compliment your partner’s independence. This is probably great advice for all partners – regardless of current health conditions – but a wonderful point brought up by Maureen.
  5. Don’t be afraid to look at alternative options or continuing to incorporate the usual everyday tasks (such as driving) that most people assume have to be sidelined with a diagnosis of dementia. As Christine shared in our last episode, a dementia diagnosis does not mean life is over. Look at ways to manage and treat the symptoms of this diagnosis, and do so in a way that works for your life.

If you’re newly diagnosed and interested in some of the resources we mentioned, see our show notes below and check out some of our past episodes: Building an Online Support Community or Dementia Prevention: The Role of Community.

Join us next time on Life With Dementia, the solution-driven podcast sharing relevant research, personal stories, and practical tips for living well with dementia.

Tune in through SpotifyStitcher, or Apple podcasts, or stream live on our website, which is: thedementiapodcast.org. And if you like what you heard, please tell other people about it and share us on social media.

Show Notes:

Dr. Tris Trethart: 9353 50 St NW, Edmonton, AB T6B 2L5. 780-433-7401. website

NIH Research Matters: Sleep Deprivation Increases Alzheimer’s Protein” National Institutes of Health April 24, 2018.

Amyloid Plaques and Neurofibrillary Tangles” Alzheimer’s Disease. Bright Focus Foundation 2000 infographic

CBD research:

Watt, Georgia and Tim Karl. “In vivo Evidence for Therapeutic Properties of Cannabidiol (CBD) for Alzheimer’s Disease” Frontiers in pharmacology vol. 8 20. 3 Feb. 2017

Marijuana and Alzheimer’s Disease” Leaf Science 22 Dec. 2017

Music by: Blue Dot Sessions

Photo by John T on Unsplash