Alzheimer's disease is the most common cause of dementia. It results in the loss of cognitive function, and it is incurable. A few drugs are currently available to slow memory loss, before the disease is too advanced, but they don't work for everyone, and they don't bring about lasting relief for anyone. One of the most hopeful approaches to the treatment of Alzheimer's is the result of work by California neurologist Dr. Dale Bredesen and involves changes in lifestyle related mainly to diet, exercise and sleep. Compared to many afflictions, Alzheimer's is relatively slow moving. Symptoms usually become noticeable after age 65, but the disease begins decades earlier with imperceptible cellular changes in the brain. There is much we do know about it. For information, visit the Alzheimer's Association website and the resource page of this website.
There are other kinds of dementia, which can cause similar symptoms. My father, a retired physician, has vascular dementia and requires constant care. The changes in his abilities and personality are heartbreaking.
In the early stage of Alzheimer's, which can last more than five years, a friend is coping with memory lapses and increasing problems with language, directions, initiative and judgement, among other symptoms that vary from person to person. As the disease worsens, round-the-clock caregiving becomes necessary. The role of caregiver is most often filled by family members, who must deal not only with overwhelming responsibilities but with the steady decline of a loved one, losing the ability to communicate and perform even simple acts of daily living, such as washing and dressing. Challenging behaviors can emerge with little warning; many of these are quite difficult to manage. Eventually, a person with Alzheimer's will fail to recognize family and friends, or even his or her own reflection in a mirror.
Dementia, whatever the cause or form, is isolating. It disrupts relationships and social connections for both the patient and the caregiver.
This page is about how to be a friend in this situation. It's a place for people to ask questions, share advice about friendship and tell their own stories. I'll be adding to it, so check back—and please send your ideas and suggestions, too. You can reach me at email@example.com or use the form below.
Being a Friend When it Matters Most
People in the early stage of Alzheimer's can seem okay to friends and relatives. A 58-year-old man with younger-onset AD says he feels bad when friends complain that he's not trying or not paying attention. It's hard to understand why some things are forgotten and others remembered, but this kind of sporadic memory is typical of early stage AD. Friends can help by realizing that it is sometimes impossible to control behaviors that might upset and inconvenience others at times. In the early stage, your friend is both the person you've always known and a person struggling with a disease that affects the ability to think, remember and make decisions.
Click the arrows for a few ideas of What to Say & What Not to Say to a friend with early stage Alzheimer's.
How do you respond when a friend or relative says to you, "My [wife, husband, mother, brother] has been diagnosed with Alzheimer's; we've been noticing some problems, but we weren't prepared for this shock"? You feel terrible for them, and you feel your own sense of loss, too. The best response may be to take the friend in your arms if it feels right, rather than saying anything. Whatever you do, think before you speak. Imagine the fear and pain your friend is feeling.
People sometimes make the mistake of turning a blind eye to how devastating this diagnosis can be. This is specially true early on, when symptoms are not so obvious. A caregiver whose 67-year-old husband suffers from Alzheimer's says she feels "stabbed" when her friends comment, "I don't see anything wrong with Jim. He seems fine!" And he probably does, some of the time. Social skills are in longterm memory and aren't quickly lost.
Click the arrows for Do's & Don'ts when you're told about the diagnosis.
Caregiving to an Alzheimer's patient who cannot be left alone is exhausting and isolating, but you can make a difference, especially if several friends work together. Look for more ideas in "Staying Connected."
Click the arrows for 7 Ways to Support a Caregiver.
More Information . . .
The tips on this page came from Mary's book, Alzheimer's: A Crash Course for Friends and Relatives. For information, click the book cover. Mary also speaks about relationships and Alzheimer's. Click the photo to learn more.
Opinions, Blogs & Stories
Letters & Questions
An answer from Jim Duchene:
Dear Brenda, The love and caring that comes across in your few words leads me to believe that you're already doing everything right. I would agree with Dr. Cail,, however, and say that you need to take care of yourself as well. Your husband, step-mother, and, I'm sure, everyone else in your life are very lucky to have you. --Jim Duchene
An answer from Mary Cail:
Here are a few thoughts that may help:
1. Allow yourself as much guilt-free time away from caregiving as you can, so that you do not burn out. I put this first because I know family caregivers have problems finding people to step in or community programs that provide respite care at a reasonable price. But if you can, involve friends, or members of a church, or neighbors: Don’t be reluctant to ask for help, even if it’s "inviting" a friend to bring lunch or dinner over to your house so you can spend some non-caregiving time together. Making time for yourself and keeping in balance as best you can will help you be there for your husband.
2. Try to separate your husband from the disease: When he is frustrating or frustrated and acting in unpredictable or out-of-character ways, remind yourself that this is the Alzheimer’s and not him. He didn't choose and cannot control the disease.
3. Forgive yourself if you lose it! Every caregiver has said and done things they regret (myself included). These times are usually not remembered for long, if at all, and you can make up for it.
4. In as much as possible, step into your husband’s world. He can no longer take part, really, in yours. Try to let him be who he is. Accept what he can give and allow yourself to feel sadness over what he can no longer give. Remind yourself that if he could, he would be expressing his love and gratitude to you.
All the best to you, Brenda.
An answer from Mary Cail:
Go ahead and get in touch the way you would if no time had passed. Don't worry about the delay. Chances are, your relatives will be more than glad to hear from you. Your uncle will understand; you can apologize (if you feel you need to) and reassure him that you want to be involved. Your aunt with moderate Alzheimer's probably will not perceive the lapse in contact.
1. Speak your uncle first:
Sympathize ("We were so sorry to hear about Aunt Sarah's recent diagnosis.") Short and sincere is safest and probably the most comforting.
Get more information ("How advanced is her dementia? Does she enjoy talking on the phone, or would a visit be better? Will she recognize us? What would she enjoy doing when we visit?")
Respond to what he's going through ("This is a hard time for you, Uncle John. As you know, Edward's mother had Alzheimer's, so we know something about caregiving" OR "This must be a hard time for you, Uncle John. We haven't dealt firsthand with dementia, but we want to know how you are and how we can help.")
2. Based on what your aunt may enjoy, plan an activity for your visit, such as looking at an old photo album or pictures of your own grandchildren and family events. Remain open to whatever seems right in the moment: It may be a good day and you won't need the activity. But planning ahead will make you feel more comfortable and might ensure a better visit if things feel slow and awkward. Some people in moderate stage dementia enjoy simple games and puzzles.Creating Moments of Joy, by Jolene Brackey is a good reference book for ideas.
Any thoughts from other readers? Email firstname.lastname@example.org.