Resources – Dementia

Spotlight: “Artful Aging: How Creativity Sparks Vitality and Transforms Lives”  

Organizations

Center for Applied Research in Dementia: Dr. Cameron Camp

Mission: To improve the quality of life of persons with dementia and related disorders, and the lives of their caregivers, by enabling persons with dementia to engage in meaningful, productive activity and to fulfill meaningful social roles within their families and communities. Through cognitive, Montessori-based dementia training and education, we strive to change attitudes and beliefs by enabling persons with dementia to be treated with respect and dignity and to continue living happy, productive and fulfilling lives as long as possible.

They have many different courses you can take in Montessori-Based Dementia Programming, spaced retrieval, communication, and more. Most workshops count for CEU’s.

Alzheimer’s Association

The ALZ Association has many support groups for caregivers as well as respite care. They also have a group for people diagnosed with early onset Alzheimer’s. They are a great place to call and get information on care, driving, dealing with doctors, what the diagnosis means, etc…

Alzheimer’s Foundation of America

Mission: To provide optimal care and services to individuals confronting dementia, and to their caregivers and families – through member organizations dedicated to improving the quality of life. This is a great organization who also has contacts to caregivers for you and a wealth of information.

Lewy Body Dementia Association

Parkinson’s Disease Foundation

Blogs and Online News

Moving In With Dementia
Rev. Katie Norris’ blog about living together as a multigenerational family caring for their loved one with dementia. This blog speaks to the emotional, spiritual, and daily struggles of caring for your loved one as a family. 

Alzheimer’s Reading Room
One of the most comprehensive blogs following what is going on in dementia care today as well as talking about how to compassionately care for our loved ones.

Caring Currents

This particular page features celebrity struggles with Alzheimer’s. Celebrities sharing their stories may bring more attention to this disease and may help people feel less alone.

Article: Alzheimer’s Falls More Heavily on Women Than on Men                                   “Distinct biological and genetic factors may shape how it progresses in women—and understanding them could be crucial to prevention, diagnosis and treatment.”

Article: Best way to combat Alzheimer’s is a healthy lifestyle, studies show       “Lifestyle choices remain the best way to prevent and reduce symptoms of Alzheimer’s, according to another failed drug trial and a five-day-long international conference.”

Article: Eye and smell tests may reveal early dementia signs                                 “Simple eye and smell tests could be used to spot dementia years before people experience memory symptoms, research suggests.”

Read about celebrities struggles with Alzheimer’s and dementia. We hope their voices will help bring more attention to this issue. 

First Lady Laura Bush

Care situation: Moved mother into a retirement home five years ago; dad died of Alzheimer’s.

“There are things you can do as a long-distance caregiver. One thing: You can build a support group in your parents’ neighborhood, get to know all the neighbors, exchange phone numbers.”

Interesting aside: While living in Washington DC, Bush traveled regularly to Texas to help arrange her parents’ care. Being in one of the world’s most high-profile lives didn’t spare her the need to establish eyes, ears, and hands on the ground miles away- a great way to help prolong a parent’s independent living.

Maria Shriver

Care situation: Father Sargent Shriver has advanced Alzheimer’s; mother Eunice Kennedy had a stroke the same year he was diagnosed, 2003.

“My kids dealt with the person that was sitting in front of them. Like, ‘What are you doing, Grandpa?’ And, ‘What are you doing today?’ And they didn’t get into who my father was. They just got into who he was [at the moment]. And I think that was a very valuable lesson to me: Accept the person that’s sitting in front of you. Stop trying to make them who they were. Let it go.”

Interesting aside: The California first lady, who wrote the children’s book “What’s Wrong With Grandpa?” and helped produced the HBO documentary series “The Alzheimer’s Project,” says she still cries that her father no longer recognizes her. At 93, he attends Mass daily and still can recite the Hail Mary, though he doesn’t know his own daughter Maria.

First Lady Nancy Reagan

Care situation: Cared for her husband, President Ronald Reagan, at home for a decade until his death with Alzheimer’s in 2004.

“When it comes right down to it, you’re in it alone. Each day is different, and you get up, put one foot in front of the other, and go””and love; just love.”

Interesting aside: When asked if she ever felt like giving up while caregiving, she told Vanity Fair (in an interview coming in the July 2009 issue), “No, Ronnie wouldn’t like that.”

There are other such stories on the page and the website as a whole can be a resource.

On that note, verywell.com has a list of celebrities with Alzheimer’s. This website is also a wealth of information, just search Alzheimer’s and you’ll pull up a multitude of articles.

Read this inspiring interview with Pat Summitt, the renowned head coach of U Tennesse’s Lady Vols since 1974, who was diagnosed with early on-set dementia, Alzheimer’s type, in 2011. She sadly passed away in June 2016.

Books

Creative Care: A Revolutionary Approach to Dementia and Elder Care by Anne Basting, Ph.D., “a MacArthur Genius Grant recipient pioneers a radical change in how we interact with the 4 million people around the world who struggle with dementia. Here Anne Basting shows how anyone can use her proven methods that use the creative arts to bring connection, light, and joy to the lives of elders and to those who care for them.”

Hiding the Stranger in the Mirror by Cameron Camp, Ph.D. A Detective’s Manual for Solving Problems Associated with Alzheimer’s Disease and Related Disorders. We highly recommend this book as a MUST READ.

Aging Together: Dementia, Friendships, and Flourishing Communities by Susan H. and John T. McFadded. A wonderful book on how to care for people with dementia as a community of all ages.

Friends Indeed: How to Help in a Serious Illness by Helene Powers. According to Powers, “People want to help, but often don’t know what to do or where to begin” and she helps answer these questions.

Care Communities

Kendal at Home