Family Caregiver Blog

When something seems amiss—not just forgetting someone’s name (who doesn’t?), but where they’re driving or repeating the same question over and over—there is this feeling of incredulity. Could it be Alzheimers? It’s not really happening.

But sometimes it is happening. I know two people who have just been diagnosed with Alzheimer’s. One is in his early 50s, the other, a woman, is 84. Their spouses have instantly become Alzheimer’s and dementia caregivers.

Couples, 50+ singles, friends, and family members don’t expect this scenario. There is no reason for them to be prepared—and so, they rarely are. Fortunately, resources abound for Alzheimer’s and other dementia caregivers, along, of course, with the 52 million in the U.S. with the brain disease.

Dementia can be isolating for both the caregiver and the person with Alzheimer’s. People who don’t know how to act or what to do may “forget” about them. Never have both groups needed more support.

A variety of Alzheimers resources

What’s out there? A lot! Support groups ranging from on the phone, online or in-person. Message boards and forums to vent, share strategies and challenges.  Free webinars. Books. 24/7 help lines. Memory Cafes. Associations and organizations focusing on dementia. Government websites and referrals. Alzheimer’s arts programs (music, poetry, art, dance, film) that spur creativity, boost mood and emotionally connect caregivers and their loved ones.

Becoming knowledgeable about the disease may let you anticipate behaviors, deal better with a new stage or issue, and mitigate stress. It will definitely give you more options and outlets.

Remember these resources

1. Alzheimer’s Association - www.alz.org/care/

• Information, education and strategies, e-newsletters, financial and legal planning, and lists of local chapters

• An Alzheimer’s Navigator, a tool to come up with an action plan tailored to your circumstances, with resources in your community

• ALZConnected (www.alzconnected.org), an online community with forums, message boards and live chat rooms for caregivers and those with ALZ and dementia, education and strategies for caregivers

• an Alzheimer’s and Dementia Caregiver Center (www.alz.org/care/)

• 24 hour help line at 1-800 272-3900

2. Alzheimer’s Foundation of America - www.alzfdn.org

• Helpline at 1-866-272-3900 (9 a.m.-9 p.m. EST))manned by licensed social workers who know resources and answer all types of questions

• Tips for caregivers

• All aspects of disease, from early warning signs to respite care

3. Alzheimer’s Reading Room - www.alzheimersreadingroom.com

• Articles for the Alzheimer’s and dementia community started by a caregiver spouse

4. Alzheimer’s Speaks (Live Online Radio) - www.blogtalkradio.com

• Directory of resources by city and state

• A myriad of topics from transportation to adult day care to beauty to brain fitness to spiritual care to medication management

• Free monthly webinars taught by people with dementia, their caregivers and professionals

5. Caregiver Action Network - www.caregiveraction.org/resources/alzheimer-videos

• Coping with Alzheimer’s Caregiver Videos Series

6. Eldercare Locator- U.S. Administration on Aging - www.eldercare.gov
or 1-800-677-1116

• Click on “Alzheimer’s” under topic, pop in your zip code or city and state, and you will be taken to local resources

• Booklets, statistics, long-term care, advance planning information

7. Alzheimers.gov Government website - www.alzheimers.acl.gov

• Comprehensive list of resources and dementia organizations

8. U.S. Department of Veteran Affairs - www.caregiver.va.gov/

• Support services, resources and information for caregivers of veterans

9. National Institute of Health - www.ninds.nih.gov/Disorders/all-disorders

• Information on the disease

• Clinical trials

10. National Center for Creative Aging - www.creativeaging.org

• Web-based and community creative arts resources and ideas

• A directory with programs nationwide