There’s been a buzz lately: a steady stream of interesting stories in the news and articles being published about caring for those with dementia and, specifically, Alzheimer’s Disease. And, in The Conversation Project’s own backyard, the State of Massachusetts has become the first-in-the-nation to have legislation on Alzheimer’s. Read more here on how this pioneering law will boost Alzheimer’s care, improving the diagnosis and treatment of an illness afflicting 5.7 million Americans. As this topic is top of mind for TCP and many others, below is a sampling of articles and resources that have sparked our interest.
- Video: Ellen Goodman Talks Alzheimer’s Disease and Dementia: Our founder, Ellen Goodman, and her mother spoke about everything except one thing: how her mother wanted to live at the end of her life. Watch this moving video where Ellen shares her personal experience of caring for her mom who had dementia. Click here to watch the video.
- Community-wide resources to become dementia friendly: Check out the Dementia Friendly Massachusetts grassroots movement and the adaptable resources (videos, checklists, etc.) they have for making communities safe, inclusive and respectful for persons with Alzheimer’s disease, or a related dementia.
- Targeted approach to dementia care: This recent National Public Radio article highlights a behavioral approach to dementia care designed by a geriatric psychiatrist at the Program for Positive Aging at the University of Michigan in Ann Arbor. This approach emphasizes training and support for caregivers as the bedrock of support for the patient.
- Targeted advance directives: Read about the rise of advance directives that are targeted specifically towards individuals with dementia/Alzheimer’s disease, including the Advance Directive for Dementia created by Dr. Barak Gaster at the University of Washington’s School of Medicine. This resource, written about at the end of 2017/beginning of 2018 in JAMA and the NY Times, is creating a buzz nationally.
- Stories and tools to help. A recent 60 minutes story invited viewers to share an intimate glimpse of Mike and Carol Daly’s journey over the past 10 years with Carol’s diagnosis of Alzheimer’s. What particularly struck us was the parting message: “When Carol was still Carol, that would have been the best time to discuss the kind of caregiving decisions Mike Daly eventually had to face alone. Mike hopes that sharing such intimate details of their lives will help others be better prepared than they were.” The Conversation Project’s Conversation Starter Kit For Families and Loved Ones of People with Alzheimer’s Disease and Other Forms of Dementia was developed to help support these critical conversations. And, we’ve learned a tremendous amount from individuals and families since we created these kits. In the blog, Why Advanced Dementia Doesn’t Have to Stop End-of-Life Care Discussions, TCP’s Faith Advisor Rev. Rosemary Lloyd shares that even when someone can no longer express themselves verbally or in writing, these kits offer some guidance.
We also recognize there is so much to learn from those providing programs to support families as they prepare for these important conversations. Listen to TCP’s October monthly community call focused on including Dementia and Alzheimer’s-specific programming into your advance care planning work. We highlighted a program called “Advance Care Planning for Dementia (ACP+D)” being offered in Bellingham, Washington, and had an open discussion to share insights from the field.
This is just a small sampling of the many resources and recent articles that are out there. What articles are you reading, or what resources do you have that others may learn from? Please share below so we can add these to our list!
Adding another recent article with multiple resources: Leading an Active Life With a Diagnosis of Dementia. This thoughtful piece shares that as the number of people with dementia rises, those with early stages of the ailment are pursuing fulfilling lives and making plans for future care.
https://www.nytimes.com/2018/10/05/business/-active-life-diagnosis-of-dementia.html?smprod=nytcore-ipad&smid=nytcore-ipad-share