I don’t think anyone grows up wanting to be a dementia caregiver. We set out to do other things with our lives, but one day find ourselves in that role. It’s an overwhelming responsibility. Every day, men and women shoulder the burden of caring for their husband, wife, parent, or other relative with dementia. Many don’t even know what illness they’re dealing with, and sometimes months or years can pass before it is diagnosed. If you are in that situation, knowledge is your friend. So much information is available though, that once you start looking it may seem impossible to sort out what’s useful and what isn’t.
There are many forms of dementia resulting from different causes. Their symptoms vary widely. I’m not a medical professional, so my first piece of advice is to find a physician who specializes in dementia and try to get a diagnosis as early as you can. Here I’ve provided information that was useful to me during the years I cared for my wife. I’ve added more sources that were suggested by the experiences of other caregivers in the support group I attend.
The Alzheimer’s Association
If I was just starting out as a caregiver, I would contact the Alzheimer’s Association first. Let them help you find the information you need, and support groups of others who are going through experiences like yours. You don’t have to be alone.
24/7 Helpline
1 (800) 272-3900
You can call the Alzheimer’s Association for information to start learning, for a referral to a support group near you, or just to have someone to talk to who understands your situation.
Mailing Address: 225 N. Michigan Ave. Floor 17 Chicago, IL 60601
Link: https://www.alz.org/
Alzheimer’s & Dementia Caregiving
Caring for a person with Alzheimer’s or dementia often involves a team of people. Whether you provide daily caregiving, participate in decision making, or simply care about a person with the disease — the Alzheimer’s Association has resources to help.
Link: https://www.alz.org/help-support/caregiving
Recommended Books
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss.
Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH. Johns Hopkins University Press, 6th edition
If you could only get one book, this is the one you need. The most trusted guide for caring for persons with Alzheimer’s disease, memory loss, and dementia disorders—with practical and legal advice and compassionate guidance for families and caregivers.
Slow dancing with a stranger: lost and found in the age of Alzheimer’s.
Meryl Comer. HarperOne, New York 2014
Tells the story of the author’s determination to care for her husband with early-onset Alzheimer’s disease. She faced a bewildering range of behavior problems during two decades of personal care. Caregivers may find similarities with their own experiences.
This book is especially valuable for caregivers to share with family members and others who want to understand what they go through daily.
Voices of Alzheimer’s : the healing companion ; stories for courage, comfort and strength.
The Healing Project. LaChance Publishers, New York, 2007
Caregivers for parents, spouses, and grandparents have written stories about their personal experiences. If you want to know what to expect during the course of dementia, you can find useful information here.
Online Resources
Eldercare Locator
A public service of the U.S. Administration on Aging, connecting you to nearby services for older adults and their families.
Phone: 1 (800) 677-1116
Link: https://eldercare.acl.gov/Public/Index.aspx
Family Care Navigator
State-by-State Help for Family Caregivers
Community Resource Finder
Get easy access to resources, community programs and services.
Alzheimer’s Association: What is Dementia?
This web page is a good place to start learning basic information about dementia.
Link: https://www.alz.org/alzheimers-dementia/what-is-dementia
Alzheimer’s Association: Types of Dementia
Many diseases of the brain can cause dementia. Each one affects health and behavior differently in the people they afflict. The links below lead to information about each type.
- Alzheimer’s Disease
- Vascular Dementia
- Lewy Body Dementia
- Frontotemporal Dementia
- Mixed Dementia
- Parkinson’s Disease Dementia
- Normal Pressure Hydrocephalus
Less common types
- Huntington’s Disease
- Posterior Cortical Atrophy
- Korsakoff Syndrome
- Creutzfeld-Jakob Disease
- Down Syndrome and Alzheimer’s Disease
National institute for Aging: Alzheimer’s Disease & Related Dementias
Alzheimers.gov is the government’s portal for information on Alzheimer’s disease and related dementias: care, research, and support.
Phone 1-800-438-4380, Mon-Fri, 8:30 am-5:00 pm Eastern Time
Email: adear@nia.nih.gov
Link: https://www.alzheimers.gov/
Alzheimer’s Caregiving
Learn how to respond to changes in communication and behavior, provide everyday care, and get help when needed. The National Institute on Aging provides a large collection of information
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