June 2019, Volume 30
There is no cure for dementia and there is unlikely to be a cure in the foreseeable future. But Dr. Tia Powell, in her new book, Dementia Reimagined, focuses on some different questions: How do we help people who are losing their memory find some joy? How do we balance freedom and safety? How do we preserve dignity? What makes a good death for someone with dementia?
Powell was interviewed by Terry Gross on a May 21, 2019 episode of Fresh Air on NPR. This article is based on that interview.
Powell is the director of the Montefiore Einstein Center for Bioethics and a professor of psychiatry and bioethics at Albert Einstein College of Medicine. But some of her knowledge of dementia comes from personal experience. Powell took care of her own mother, who had dementia, and Powell's grandmother (the mother's mother) also had dementia.
In the book, Powell tells a story about her mother caring for her grandmother in the late stages of dementia. Powell's mother got the grandmother out onto the porch, which was difficult to do, since the grandmother couldn't move easily. But her mother got the grandmother out there, put her in an easy chair, put her feet up, and tucked in, around the grandmother's legs, an afghan that the grandmother herself had crocheted many, many years before, when she'd be able to do things like crochet.
And, after all of this effort, Powell's mother looked at her grandmother and asked, "There, Mother, how is that?"' She was incredibly proud of her work in trying to make her mother comfortable. The grandmother had been mute for many months prior to this - something that commonly happens in the late stages of dementia. But now the grandmother was struggling to say something. And she struggled and struggled and with great difficulty she pulled out a single word. She looked at her daughter, Powell's mother, and said, "Lousy."
Powell shares this story because it made her think: Even though dementia is lousy, isn't there something more we can do here? Is there a way we could help to make dementia a little bit less lousy?
Powell talks in the book about having greater understanding. She suggests figuring out how to listen better to people with dementia while they can speak. There will be stages when the person with dementia will not be able to speak to express what can make things better. So, looking at it from the person's point of view and with knowledge of what is important to them can assist us in figuring out what we can do to bring joy to the person's life.
Powell recognizes that we don't fully understand all the reasons for everything that happens with dementia. Co-occurring mental health problems like depression, anxiety, and paranoia that often come with dementia are not entirely straightforward. But dementia, depression, anxiety, and paranoia are all brain diseases.
It might help us to partly understand and explain the paranoia if we realize that to a person with dementia, the world doesn't make sense anymore. You're sure that you put a pencil down over here, and it's not there. Has someone moved it? Is the world against you? And it may just be. Well, it was three days ago that you put the pencil there - or was it three years ago? You don't remember anymore.
So, sometimes people elaborate and create very complex theories about where that pencil went. But it may be more chemical than that. It may be that the wires are crossed. Something in the brain is folding the information that it's receiving into a wrong theory of what just happened. This may happen with depression and anxiety, too.
Powell also shares a couple of stories about her mother's wishes not being honored by caregivers. While still living in her home, her mother had a caregiver who was with her all the time - but they didn't get along. The caregiver wanted to watch TV and the mother didn't. The mother had loathed daytime TV all her life. This made for a constant struggle between the mother and the caregiver.
If we do a thought experiment and imagine a world in which we don't know what just happened a minute ago and we don't know what's going to happen a minute from now - you begin to understand how anxiety-producing - even frightening - that would be. Somebody comes to you and says, "Take off your clothes - I'm going to bathe you." And you have no idea who this person is. What is going on here? That doesn't sound like a good idea at all. It is frightening.
Having empathy for the person with dementia is a start. Think about what you would want in those circumstances. What would help you be less frightened? Answers to these questions are very individualized.
She talks about the need for institutions to resist the tendency to evolve to serve the needs of the people working there. While it's often not intentional, things become about the convenience of the staff.
It is a small thing, but Powell's mother loved taking baths. Although the assisted living facility initially told her she would be able to take baths there, it turned out that they meant that, because of safety issues and fear of liability, a staff member had to stand outside of the partially-open door the whole time she was in the bath to make sure she didn't drown. And it turned out, this place didn't want to do that. They said they didn't have the staffing. They told Powell's mother, forget it, it's not happening. Go take a shower.
It sounds like a very small defeat. But if your life is at a point where there are relatively few things left that actually make you happy, why would want to give up on any one of those? For somebody with dementia, something as seemingly-small as a bath could be pretty big. It could be the one spot of sunshine during your day. Why would you want it taken away?
If we're searching for things that can add some joy to life even with dementia, we should recognize the positive influence that music can have. The part of the brain that processes music resists dementia. People in all stages of dementia are able to enjoy music, if it's the right music, the music that they care about. There's a wonderful program developed by a man named Dan Cohen called Music and Memory. Cohen visits nursing homes and tries to build playlists for people with dementia. If you play the right music, the right song, people really perk up. They really look happy. Such a small thing does make a difference.
Look in a similar way at other life interests. If someone used to like being outside gardening or hiking, try some outdoor activities. Someone may be happy to just sit in nature, able to feel and smell flowers and other plants. You may have to experiment a bit to find out what makes someone happy.
For more on this topic, check out the following.
Reference: Powell, Tia; Reimagining Dementia: Building a Life of Joy and Dignity from Beginning to End, Avery, 2019.
Eight Skills to Cultivate Joy in Caregivers
Adapted from an article by Allison Aubrey,
"From Gloom to Gratitude: 8 Skills to Cultivate Joy", on NPR
You can be taught to have a more positive attitude. And - if you work at it - a positive outlook can lead to less anxiety and depression.
The latest evidence comes from a new study of caregivers - all of whom had the stressful job of taking care of a loved one with dementia. The study found that following a five-week course, participants' depression scores decreased by 16% and their anxiety scores decreased by 14%. The findings were published in the current issue of Health Psychology.
The course teaches eight skills to help people cope with stress. Techniques include mindfulness, deep breathing, setting an attainable daily goal, keeping a gratitude journal and - yes, it works - performing small acts of kindness.
Skeptical? Melissa Meltzer Warehall was too. She's caring for her husband, Paul, who is 64 and was diagnosed with early onset Alzheimer's in his 50s.
"It's very, very frustrating," Warehall says, "to know the man he used to be and the shell of the person he is now."
When she agreed to be a participant in the study, it was a way to reach out for help. She knew she couldn't change her circumstances, but she wanted to learn to cope better.
"When you're experiencing a lot of stress, it's easy to head into a downward spiral," says Judith Moskowitz of Northwestern University. She is trained as a psychologist and studies the way positive emotions can influence people's health and stress. She developed the program taught to caregivers.
As part of her research, hundreds of stressed-out people have taken the five-week skills class, including women with breast cancer; people newly diagnosed with HIV; people managing Type 2 diabetes and people with depression. She has documented benefits in each of those studies.
"These skills can definitely help people, no matter what type of stress they are experiencing, even if it is 'minor' everyday stress," Moskowitz says
Warehall says she began to feel a shift to a sunnier outlook just a few weeks into the program. One skill she learned: how to reframe the daily hassles of life into something positive.
For instance, she says, it can be challenging to take her husband on outings: she has to be on guard against him wandering off. Also, he has begun to have trouble navigating in and out of the car, and that can be frustrating for them both. But instead of focusing on the downside, she has taught herself to spend those long moments being consciously grateful for what they're still able to do together.
Though her husband can't work or take trips anymore, she has helped him rediscover music. "I signed him up for harmonica lessons every Saturday," she says. And that's great for both of them. "Just being with him when he makes music - he plays a mean blues harmonica - it's wonderful for me too."
She's learning to cling to the positive moments that come alongside the stress. And this makes it easier. "Everything that we do that's challenging, I look for that silver lining," Warehall says.
But this doesn't come naturally, she says. She has tried to build a habit of gratitude. Writing down one thing each day is one way she reminds herself that there are still lots of joyful moments - despite their stressful situation.
She has learned to focus on what is, instead of what's lost. "I remind myself I still have him. I can still hug him and hold him and tell him I love him."
"In the context of stress, it can be hard to see the positive things," says Moskowitz. "So taking a moment to notice things you're grateful for is really beneficial."
Moskowitz says she knows the hesitation or resentment people sometimes feel when they're told, "Chin up! It'll all be OK." That's a hard message to handle if you're reeling from the news of a serious diagnosis or another traumatic experience.
"We're not saying don't be sad or upset about what's going on," Moskowitz emphasizes. "But we know people can experience positive emotion alongside that negative emotion, and that positive emotion can help them cope better."
She says these strategies and skills are widely applicable. "Anyone can be taught to be a little more positive."
She says the strength of the eight-technique approach is that there's no single skill that helps everyone. "It's a buffet of skills," she says, and therefore it gives people lots of options.
Here's a quick summary of the eight techniques used in Moskowitz' study:
- Take a moment to identify one positive event each day.
- Tell someone about the positive event or share it on social media. This can help you savor the moment a little longer.
- Start a daily gratitude journal. Aim to find little things you're grateful for, such as a good cup of a coffee, a pretty sunrise or nice weather.
- Identify a personal strength and reflect on how you've used this strength today or in recent weeks.
- Set a daily goal and track your progress. "This is based on research that shows when we feel progress toward a goal, we have more positive emotions," Moskowitz says. The goal should not be too lofty. You want to be able to perceive progress.
- Try to practice "positive reappraisal": Identify an event or daily activity that is a hassle. Then, try to reframe the event in a more positive light. Example: If you're stuck in traffic, try to savor the quiet time. If you practice this enough, it can start to become a habit.
- Do something nice for someone else each day. These daily acts of kindness can be as simple as giving someone a smile or giving up your seat on a crowded train. Research shows we feel better when we're kind to others.
- Practice mindfulness by paying attention to the present moment. You can also try a 10-minute breathing exercise that uses a .focus on breathing to help calm the mind.
Janice Kiecolt-Glaser of Ohio State University was not involved in this study but has researched the effects of caregiving on the aging process, and she says Moskowitz' work dovetails with many of her own findings.
"There's certainly ample evidence from our research and others' that the stresses of dementia caregiving can take a toll on mental and physical health," Kiecolt-Glaser says.
"This study used a simple intervention that had measurable positive benefits. It's a lovely contribution to the literature, and I would hope to see wider implementation of this and similar approaches," she says.
JUNE ACTIVITY TIP
Vertical Hanging Herb and Vegetable Garden
- Hanging pocket shoe organizer.
- Pole and attachments (curtain rod or a pipe)
- Utensil hanging hooks.
- Potting soil of good quality that holds moisture.
- Selection of plants, lettuce, thyme, oregano, basil, etc.
Directions for Initially Creating the Garden
- Attach the pocket shoe organizer to a wall or fence using brackets to hold the pole. Use the hooks to attach the organizer to the pole. Make sure the hooks can hold the weight. Add pieces of 2" x 2' of wood to keep the organizer off the wall or fence. Add a long planter underneath the organizer to catch the drips.
- Test the drainage by pouring water into all the pockets. If there is no drainage, make a few small holes in each of the pockets.
- Fill each pocket with the dirt, making it sure it is good, moisture-retaining compost. Leave at least 1 to 1 1/2 inches from the top rim so that water does not pour out over the rim when watering.
- Plant the vegetables and herbs.
- Add a drip aid by using a piece of wood to make sure the excess water drips into the longer planter.
Maintaining a Healthy Hanging Garden
- Water slowly with a gentle flow or you may wash soil and plants out of the pocket.
- To allow the plant to re-grow, do not over-pick salad leaves.
- It is important to look out for aphids, slugs, caterpillars and other pests.
- Remove unproductive plants and compost them.
- When reusing pockets add fresh compost.
Reference: FaveCrafts www.favecrafts.com