11.21.16 Mary Yarmin-Garone, DeMystifying Alzheimer’s
Good afternoon. Welcome to Demystifying Alzheimer’s. I’m your hostess Mary Yamin-Garone.
Today’s topic is “Living with Alzheimer’s.”
Most of what we know about people living with Alzheimer’s is grim. Media reports show helpless individuals and their caregivers who can barely cope, all of them miserable and isolated. However, according to an Alzheimer’s Disease International survey, most of those suffering with mild to moderate AD still can enjoy life.
Most of the respondents with Alzheimer’s said they enjoyed warm relationships with their caregivers and felt safe and supported at home. More than 80 percent said they continued to “keep a social life with their family and friends” and felt “well-respected by family members.”
The survey didn’t ignore the difficulties of living with someone with Alzheimer’s. A majority of caregivers said, “caring for someone with Alzheimer’s is burdensome.” Nevertheless, over 70 percent reported that taking care of someone with AD helped them “appreciate what’s really important in life, that it’s a way of repaying some of the love and care they received in the past and more than one-half called the work “rewarding.”
Bioethicist Nancy Dubler is believed to be the first person to propose a Bill of Rights for Alzheimer’s patients and their families. Here are the principles many have adapted and modified.
As someone living with Alzheimer’s, you have the right to:
- The most thorough and accurate diagnosis and treatment available;
- Be informed about your diagnosis and the results of all tests;
- Start treatment before losing additional functions and receive appropriate, ongoing medical care;
- Participate as long as possible in decisions about your present and future, including where you live and who provides your care;
- Be productive in work and play as long as possible;
- To be treated as an adult, not a child;
- Express your feelings and be taken seriously;
- Live in a safe, structured and predictable environment;
- Enjoy meaningful activities each day;
- Exercise appropriately;
- Be out-of-doors regularly;
- Have physical contact;
- Be cared for in proximity to those who know your life story and who respect your cultural and religious traditions; and
- Be cared for by individuals well trained in dementia care.
Alzheimer’s isn’t your entire life.
Caregiving involves enormous responsibilities, daily challenges and a seemingly endless number of small duties and tasks that can wear down even the most patient of providers. If all you do is deal with AD, you’re more likely to become isolated, stressed and depressed. I saw that happening with my father.
Don’t let caregiving consume all your time. According to mental health experts you should:
- Interact and socialize with other people. Go to a meeting or class outside your home. When you’re at home, spend time with your grandchildren or talk on the phone.
- Do something that gives you a sense of accomplishment. Cook or bake one of your favorite recipes. Choose a project and finish it. Set an exercise goal, such as getting in shape to run a race, and work to meet it. Help someone accomplish something.
- Do at least one thing you enjoy. For my father, it was golf. Watch a movie, take a walk, sing and dance along to your favorite CD or take up gardening.
Alzheimer’s sufferers need people. They also need predictability and quiet. The following strategies may help you meet those needs.
- Eat in. Restaurants are loud, distracting and confusing to many people with Alzheimer’s. Order from a favorite restaurant and enjoy the meal at home.
- Visit at the time of day that’s best for your loved one.
- Visit alone or with another person when possible. People with Alzheimer’s do better one-on-one.
- Even if you’re there to lift their spirits, try to be calm and quiet. When you arrive, try to establish eye contact. Call them by their name and remind them who you are. They may or may not recognize you when you get there.
- Keep the conversation simple and in the present. If we haven’t seen someone in a while, it’s normal to ask about what’s happened since, such as “How was your weekend?” or “Did you get to see David when he was in town?” Try to remember that questions like these can be taxing for someone with memory problems. They might feel like it’s a challenge or test.
- Avoid speaking loudly or as if you were talking to a child.
- Conversation is harder on some days than others. Consider bringing along some photos, a video or even a game you can share in case they’re not particularly talkative when you’re there. You may not want or need it but you may be glad and relieved to have it on hand.
To someone with Alzheimer’s, the world grows increasingly less familiar and more fraught with uncertainties. I remember standing with my mother in her kitchen when she said, “I have no idea where I am.”
Do your best to maintain an environment that feels familiar, comfortable and safe for your loved one. Concentrate on routines and plan their schedule so it includes activities they know and enjoy. If he’s a sports fan, be sure to turn on the game. If she’s a lifelong churchgoer, take her to a service.
Routines are essential. If possible, schedule activities at the same time every day to enhance your loved one’s sense of stability. Be cautious in planning activities that might demand skills and abilities that they’ve lost. Be aware of physical limitations, such as spatial orientation or coordination, and whether they can start an activity on their own. Alzheimer’s can be unpredictable and demanding. Planning a schedule frees you from trying to figure out what to do from one moment to the next.
If your loved one responds well to an activity, do it repeatedly. Research studies show that the following activities are therapeutic for those with Alzheimer’s and may reduce problem behavior.
- Playing music your loved one enjoys
- Interacting one-on-one
- Playing videotapes of family members
- Walking and gentle exercise and
- Pet therapy
Physical activity can help prevent muscle weakness and health complications that develop in those who are sedentary. Getting exercise encourages a normal day and night routine, which may help boost your loved one’s mood. While exercise won’t stop the progression of Alzheimer’s, it can provide emotional satisfaction and a feeling of accomplishment.
The best activities have a purpose. They let someone with AD know they’re wanted and needed. They also should focus on enjoyment, not achievement.
That’s all for today. Thanks for listening. I hope this information was helpful.
Join me next time for more Demystifying Alzheimer’s.