I was a primary caregiver for a person who had dementia for 10 years. There are a lot of things I wish I had known 10 years earlier. Here are seven of the most helpful tips for dealing with dementia I learned from the experience.
1. People who have dementia often respond to music
When I was very young, I had a 90-year-old neighbor who cared for his 90-year-old wife who had advanced dementia at home. She couldn't speak, couldn't get out of bed, couldn't feed herself, and, at the time I met the couple, hadn't spoken in four years. But one day I had bought an electric piano and my neighbor asked if I couldn't bring it over and play Christmas carols. I did. And to our mutual amazement, my neighbor who hadn't spoken in four years started singing with us.
There have been at least 28 clinical studies of music and dementia in the peer-reviewed medical literature. The findings of clinical research are not really all that surprising:
- People who have dementia are happier and less agitated when they get an opportunity to hear music they like. If your loved one with Alzheimer's was into boogie woogie, don't expect improvements if you play Shostakovich. Favorite tunes from earlier in life are best.
- It doesn't make a lot of difference whether music is played aloud of the patient listens through headphones, at least to the patient listening to the music.
- Making music (singing, playing an instrument) is more therapeutic than listening to music, but both are beneficial.
2. People with dementia have good days and bad days, but mostly bad days
There is a complex of dementia symptoms that gets labeled as behavioral and psychological symptoms in dementia (BPSD). Without getting too technical, it's enough to say that delusion, agitation, and downright meanness can dominate a dementia patient's day. Or week. Or month. About five out of six people who have advanced dementia go through a year or more in which they display BPSD, and BPSD days occur 50 to 80 percent of the time.
What this means to loved ones can be interpreted two different ways:
- You can just give up on visiting your loved one because you know there's going be something disturbing most of the time.
- You can show up every day and you'll probably have a few really good days with your loved one when it almost seems like they are well again.
3. If sundowning is a problem, turn on the lights
Sundowning is something that shows up in moderate to advanced dementia. It's a set of symptoms connected to damage to a part of the brain called the hypothalamus. People who "sundown" suffer late-day confusion, especially when they are unusually tired, or they have a urinary tract infection, or it's cloudy outside during the day. They get a feeling that they have to do things that they once had to do at sundown. Maybe they'll have an urge to pick up their kids from school, even though those kids are now 49 and 57.
My dad had been a farmer. He had an urge every afternoon to feed the cows (which the nursing home did not allow him to keep in his room, although I once playfully suggested it). The problem gets worse if the lights are dim during the day and bright at night. Part of the solution is simply turning on bright lights during the day and turning down the lights during the day. It's especially important not to turn on bright lights during the middle of the night.
4. Make sure your loved one's room smells good
If you have dealt with advanced dementia, you're really familiar with the smell of pee and poop. Don't let them linger. It is important to keep dementia patients clean, of course, to prevent skin irritation and bladder infection. But replacing unpleasant odors with pleasant odors has other benefits:
- "Aromatherapy" can result in objectively easier caregiving in about two weeks. One study measured these changes objectively with psychological instruments such as the Neuropsychiatric Inventory (NPI), the Cohen-Mansfield Agitation Inventory (CMAI) and the Zarit Burden Interview (ZBI).
- World-wide, the two most commonly used essential oils for managing BPSD in dementia are two plants in the mint family, Melissa officinalis L. (lemon balm) and Lavandula officinalis L. (lavender).
- It's the "rosemary" smell (from rosmarinic acid) that makes the difference in aromatherapy. Research has found that it is antinociceptive, that it relieves pain.
You don't necessarily have to do full-fledged aromatherapy to help people who have dementia feel better. Even cleaning up with Pine-Sol helps. But using aromatherapy diffuser in the room with lemon balm or lavender probably will reduce anger, upsets, and even delusionality. It just won't eliminate them.
There's one more kind of aromatherapy that can help. The smells of favorite foods are comforting. Many, many people are comforted by the scent or taste of vanilla. (In the US, food manufacturers are aware of this, so they put trace amounts of vanilla in all kinds of foods, even ketchup and hamburger buns. This one of the reasons that hamburgers and cheeseburgers are so popular in America.) But be aware that foods served at family events where there were arguments or upsets are also memorable and can cause agitation.
5. People who have dementia want to feel at home
Photos make a huge difference in a dementia patient's room. If you are concerned that irreplaceable originals will be destroyed, make color photocopies. Make a poster of get-well messages and cards. Bring familiar, non-breakable objects from home that can't be used in a fight (no sharp edges). There is less agitation when there is more of an at-home feeling. The more mobile a dementia patient is, the greater the benefits of having a "home-like" room to which to return.
6. Dehydration and malnutrition can be deadly in dementia.
"Failure to thrive" is a catch-all cause of death that appears on a lot of death certificates. One of the major causes of failure to thrive is that there are other things going on that interfere with eating and drinking for most advanced dementia patients. Dehydration, particularly, can be very hard for caregivers. One "good day" can be followed with the dementia patient near death because some combination of favorite faulty foods and not getting enough to drink and urinary tract infection leads to dehydration. Then you have to make a decision on whether to let your loved one go or send them to the emergency room for IV fluids. It's not unusual have to do this over and over again.
I personally was not going to let my own father die of dehydration on my watch unless he specifically asked to be allowed to die. There were extraordinary treatments I would not want him to endure, but water was not one of them. Family members at a distance from the situation (such as his siblings) expressed their opinions to the contrary,and others (again, not the immediate family) expressed opinions not grounded in knowledge. It is important to establish the patient's wishes and who has authority to make decisions for the patient ahead of time to avoid arguments and legal disputes and lasting rifts in families.
7. Powers of attorney need to be finalized before dementia progresses beyond the "mild to moderate stage."
My father managed to accumulate at least two wills and three powers of attorney.These caused considerable upset and expense. It is important to choose one person to make decisions for the dementia patient if incapacitation sets in. It's also important to have powers of attorney, wills, and final directives in a legally enforceable form. Even with this, there will be judgment calls. Your loved one may make a statement to a doctor that invalidates their written wishes. Or seem to. Well-meaning family members and close friends who see the situation differently (recall the comment on visitors who come every day versus visitors who come seldom or not at all) and suffer lasting ruptures in relationships if end of life planning is not undertaken while the patient is still competent.