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Caring for a Parent With Dementia

AARP Caregiving Advisory Panel member Barry Jacobs answers reader questions about caregiving

Experts on the AARP Caregiving Advisory Panel answer reader questions and offer helpful advice. Below, clinical psychologist and family therapist Dr. Barry Jacobs responds to two queries about caring for parents with dementia.

Q. My mother has been diagnosed with vascular dementia. She suffers from paranoia — for example, she thinks her phone is tapped and that people come into her apartment and take things — and takes medication to treat it. She wants me to be with her all of the time, yet she suspects even me. Do you think that cognitive therapy will help at this stage?

A. It hurts when the person you are striving to help accuses you of malevolent intent and hostile acts. It's what makes paranoia — an irrational fear of others that's a common delusional symptom of dementia — so exasperating and often stymieing for family caregivers. Try to win over your loved one with sweetness and reassurance and she may regard you with greater suspicion. Confront her, however gently, about her unwarranted mistrustfulness and she's likely to feel threatened, convinced that you're allied with the swarms of enemies who mean her harm.

How might cognitive therapy help your mom? This popular, evidence-based form of psychotherapy (often part of a broader approach called cognitive-behavioral therapy) helps people become more aware of and better able to correct the irrational distortions in their thinking in order to decrease responses of depression and anxiety. There is some research (primarily conducted in England) that suggests that cognitive therapy techniques can be effective in decreasing paranoid distortions. In my clinical judgment, however, such techniques are most likely to work when paranoid delusions are relatively mild — not the severe and myriad distortions your mother has been experiencing. If she won't talk on the phone for fear it is tapped, she is likely to clam up and hunker down in the office of a mind-probing psychotherapist — if you could even persuade her to go.

So how should you deal with your mother's paranoia? Allow the medications enough time to decrease her delusions and make her thinking more reality-based. Once the quality of her thinking substantially improves, ask her primary care physician to refer her to a psychotherapist for a trial of cognitive therapy to help her better recognize and correct whatever distortions in her thinking remain. She won't ever be the cogent and perhaps appreciative person she once was; her dementia, unfortunately, precludes that. But at least, if her fear is reduced, you will suffer less heartache.

Q. How do you convince an elderly parent with dementia that she needs in-home care? She is resistant to the idea of having someone in the house during the day, but her dementia is worsening steadily. What are some ways that I can broach the subject without her becoming defensive and upset? I need help, desperately.

A. I've heard all the common excuses for not allowing a home health aide into one's home ("Strangers may steal"; "No one can take care of me as well as you can") and some uncommon ones ("I can't get to the front door in time to let her in"; "I don't feel like having to talk to anyone"). Yet in-home care can be the difference between a loved one with dementia being able to remain in her home and having to move into an institutional setting. In the best-case scenario, a home health aide, over time, may become a trusted, cherished friend who's practically another member of the family.

You ask about how to convince your mother that she needs a home health aide. My answer is that you may never convince her; you just need to feel comfortable about making the decision for her regardless of whether she gets defensive and upset. There comes a juncture in the progressive decline of any person with dementia when their judgment becomes so faulty that other family members, in good conscience, must use their own judgment instead. I believe you and your mother are at that tipping point. I'm sure that overruling her will make you feel guilty. But I'd ask you to consider what is ultimately in her best interest — to have her way but be unsafe at home or to defer to your better reasoning and learn to live with unwanted company? I'd also explain to her that, by tolerating the encroachment of the aide, she is granting you greater peace of mind while you are at work.

I'd use a foot-in-the-door strategy to gradually introduce the aide into your mother's house in order to increase the chances she'll eventually accept and even enjoy the companionship. For the first few times, arrange for the aide to spend only an hour or two with your mother. You should be present the whole time as a kind of matchmaker, fostering conversation between the two of them, telling stories about each other's backgrounds and families, and encouraging them to play games or work on crafts. The idea is to humanize the aide for your mother while, at the same time, acquainting the aide with the person your mother is and has been. Then incrementally increase the amount of time that the aide is there. You should begin leaving your mother's house while the aide is still present. Finally, ask the aide to go to your mother's house without you.

I've seen this painstaking approach — creating greater familiarity and building the relationship over time — work in many cases. If your mother still continues to refuse to speak to the aide or tries repeatedly to fire her, however, you may consider other alternatives for ensuring her safety. Many communities have adult day care programs where demented individuals spend the day among others with similar problems, engaged in group activities such as music appreciation, personal reminiscences and memory games. Older adults often resist going to these centers, too; as with home health aides, many come to appreciate them once they become routine.

The other alternative, of course, is placing your mother in an assisted living facility or nursing home. While such institutions offer patients with dementia increased security, greater social stimulation and skilled care, many families initially balk at considering them. The more determined you are now about setting up sustainable in-home care, the less likely your mother will need an institutional setting in the near term.

Dr. Barry J. Jacobs is a clinical psychologist, family therapist and the author of the book, The Emotional Survival Guide for Caregivers — Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006).

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