Resources for Patients and Caregivers
There are several informative documentary series and written literature that can help you to better understand dementia: what it is, what it looks like, and what scientists are doing about it. There are also novels written about individuals with dementia, and how it affected not only the main character’s life, but also the lives of those closest to them. Below are some highly recommended videos and readings to help you through this process as well as community resources and links to useful organizations.
- Alzheimer’s Action Plan by P. Murali Doraiswamy, MD and Lisa P. Gwyther, MSW
- Still Alice by Lisa Genova
- Tuesdays with Morrie by Mitch Albom
- When Your Loved One Has Dementia by Joy A. Glenner
- The 36-Hour Day by Nancy Mace and Peter Rabins
- Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer’s, and Parkinson’s Disease by Pat Snyder
HBO Series “The Alzheimer’s Project”
This particular resource has four excellent videos for you to watch:
- The Memory Loss Tapes
- Grandpa, Do You Know Me?
- Momentum in Science
These documentaries can provide invaluable information for anyone being affected by Alzheimer’s disease.
Also, Lewy body dementia community education and support facilitator, Pat Snyder, has created a YouTube channel with short, informative videos on a variety of topics for caregivers of patients with dementia.
Melanie Bunn, RN, and consultant with the Alzheimer’s Association of North Carolina, describes home and community care resources for caregivers and health care providers.
Your local Area Agency on Aging can be one of your greatest resources. If you prefer to speak with someone over the phone or meet face to face, the individuals at the AAA can be a great help for meeting your needs. They can answer questions, provide expert advice, locate services, and offer referrals to older adults and their caregivers. They can also inform you about upcoming events and information sessions.
To locate the contact information for your region, view the Area Agency on Aging Directory or visit the North Carolina Division of Aging and Adult Services website. If you reside outside of North Carolina you can locate your state and local AAA on the National Association of Area Agencies on Aging website.
Resources for people with Alzheimer’s disease and related dementias.
A national organization dedicated to education, research, and advocacy. Their website offers online educational resources.
A North Carolina-based resource for caregivers. AlzNC offers counseling, support groups, resource and referral services, funding and more.
A national organization whose goal is to provide support, services, and education to individuals, families, and caregivers affected by Alzheimer’s disease and related dementias nationwide.
This website provides information and training on how to bathe persons with Alzheimer’s disease and related dementias without causing agitation or discomfort.
This website provides information about what public benefits may be available to you and how to access them.
The Carolinas Center serves North and South Carolina by providing educational resources, guides, and tools on hospice care, advance care planning, palliative care, and other end-of-life topics.
This website provides online educational resources for caregivers including strategies, tips, facts and online caregiver support groups.
The Legal Aid Society of NC offers free legal assistance at the Senior Legal Help Hotline. They can assist with wills, powers of attorney, public benefits, abuse and neglect, nursing home/assisted-living discharges, and other services.
The Alzheimer’s and related Dementias Education and Referral (ADEAR) Center is a service of the National Institute on Aging (NIA). One of the most useful aspects of the website is the “Publications” section where free, downloadable fact sheets can be found.
SHIIP is a state-run service that provides free counseling to Medicare beneficiaries and caregivers about Medicare and long-term care insurance.