Wednesday, October 22, 2014

Friday, January 11, 2013 SandiB, Community Member, asks

Q: I want to do a research paper entitled ' How Alzheimer's Disease affects family members'? Where do I find articles, books, etc. on this topic?

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Answers (5)
Carol Bradley Bursack, Health Guide
1/11/13 5:03pm

There are a lot of good books on this topic in most public libraries, and there are several ebooks available.


" I Still Do," by Judith Fox is an amazing book/photo essay. "I'm Still Here," by John Zeisel, Phd, is excellent. "Passages in Caregiving," by Gail Sheehy is another good book on families who are caregivers - very far reaching.

If you want some short, personal stories, my own book, "Minding Our Elders: Cargivers Tell Their Personal Stories," can provide you a look into their lives. Several of the caregivers I interviewed took care of elders with Alzheimer's. Check with your librarian and see what your library has.


Also, visit the sites of the Alzheimer's Foundation of American ( and the National Alzheimer's Association ( They will be able to recommend many resources.


Good luck with your research.


AFA Social Services, Health Guide
1/16/13 12:17pm


Dear Sandy B.


There is a wealth of literature related to Alzheimer’s disease and caregiving.  To get a sense of what the caregiving process is like, you may want to read a memoir written by a caregiver or an individual with Alzheimer’s disease.  In addition to the titles listed in previous posts, I would recommend the following:

  • Don’t Eat the Elephants by Patricia H. Miller
  • Still Alice by Lisa Genova

Another way to learn about caregivers’ experiences is to browse the Alzheimer’s Foundation of America’s award-winning interactive Web site for family caregivers,, where you can connect and learn from family and professional caregivers and experts.  You may also want to check out AFA’s discussion board at, a forum for caregivers to share their experiences and stories.


For teens’ perspective, read the award-winning essays on AFA Teens


If you are looking for academic articles there are several scholarly databases that are accessible to the public where you can search for academic articles on this topic.  You may want to consider to following search engines:





The AFA Social Services Team

Dorian Martin, Health Guide
1/30/13 7:12pm

Hi, SandiB,


I'd suggest starting with the Alzheimer's Association, which often puts research updates on its website. That organization also does a yearly update with lots of data that should be helpful for your paper. You also will probably want to get ahold of the National Plan that Congress passed and President Obama signed into law, which should have some data that would be helpful. Another resource is the National Institute of Neurological Disorders and Strokes, which should be able to direct you to some resources.

Good luck!



jill, Community Member
2/12/13 11:52am

you should talk directly to family members of alzheimers patients. there's nothing you can read in an article that will fully explain just how dificult it is

NC, Community Member
2/14/13 1:15pm

I would like to suggest that you become a volunteer in the memory unit for the Alzheimer's patients. You will be able to see the family members and you can then talk to them about their feelings. Sometimes some family members may not want to talk about it. Or you can become a volunteer for home care and find the family with Alzheimer's patients for your research. Not every family likes to be researched esp. if they are in the middle of the struggle for caregiving. It is very hard to take care of a patient with Alzheimer's. Emotionally it is draining foir the family members. Professionals tend to be able to treat the patients nicely without any emotional burden. But familiy members may have personal mixed emotions with the loved ones. The difference is that it is sometimes too personal.




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By SandiB, Community Member— Last Modified: 02/14/13, First Published: 01/11/13