Is it true that it's better for Alzheimer's patients to be cared for by family than strangers?

1 answer | Last updated: Sep 14, 2017
Seekingguidance asked...

Hello, Would greatly appreciate your expert/experienced suggestions on this: my father in law is 84 years old and has more than moderate ALZ. He can't remember things for more than 10 minutes; he basically retained his childhood memories firmly, everything else throughout the rest of his life is blurry to him. He is living with his family members currently surrounded by lively grand children and others all the time. But for unavoidable circumstances he is suppose to move to a separate living arrangement where an non relative home care giver will accompany him throughout the day, he would get to see his son for an hour or so in the evening that's all. My husband and I are trying to oppose this arrangement since we know ALZ patients needs to be within known people in familiar environment. I surfed thru the web to collect info in support of that but failed to collect data or medical facts to present to others and convince how seriously it could worsen his Alzheimer! Please help me with good info and resources. Thanks so very much in advance.

Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

There's no ironclad rule on whether staying at home is preferable to living in a facility. There are advantages and disadvantages to both.

Living at home with family has obvious advantages, however it's not necessarily panacea. Caring for a person with advancing Alzheimer's disease is an incredibly stressful job and unfortunately there are no comprehensive training programs for dementia caregivers. A person in the later stages of the disease and no longer able to communicate, will still sense the stress that commonly affects his caregivers. His reactions may be agitation or aggression, which naturally will accelerate the problem. Even when the family is doing this out of pure love, they may not realize how being the only one with dementia in a family can be very isolating and lonely.

Many people with Alzheimer's actually thrive when they move into a facility, because they have a built-in social network of folks who are also in various stages of dementia. The downside is some loss of self-determination. You can help your father-in-law by putting together his life history in brief as well as his normal routines, likes and dislikes. For example, when he likes to bathe and how, his normal sleep-awake routines; his favorite foods, music, movies, and conversation topics.

In your case, your father-in-law's current home sounds like a very lively environment, which may easily exceed his tolerance levels, so he may actually benefit from the move.

You're correct about the importance of a demented person feeling safe in familiar surroundings, which can be accomplished with this carefully orchestrated transition process: Have the caregiver come to the house to spend the days with him for at least a month before the big move. There's a benefit to this approach. Your family will be able to see if the two of them are able to bond, which is crucial to a one-on-one relationship. If they don't click, it gives you the opportunity to find someone else. It's important not to rush this process.

Once your father-in-law has accepted his new "best friend", you can consider moving him into the facility. His caregiver will be sharing the move with him including staying overnight the first two to five nights. (I must assume that your family would only consider a caregiver with training and experience with Alzheimer's.)

In the long run, the biggest benefit of his living in a facility is the opportunity to form relationships on his own. The caregiver can be a great help initially in introducing him to others, finding his way around the place, and getting him used to the routines. But even the best caregiver can be a hindrance to his connecting with others, so he/she should be phased out down to part time after a while. Because the caregiver initially spent full days with your father-in-law and observed the daily routines, he/she is your best eyes-on-the-ground on his wellbeing. I suggest that he/she continues to spend a couple of hours with your father-in-law two or three days a week.

Even after he has moved, it's also important for your family to stay involved in his life. Talk to them about volunteering to do a weekly story-telling session or sing-along with him and his fellow residents? The grandchildren should be urged to join.