If you’re one of the 15 million Americans who provides care to a family member with Alzheimer’s disease or dementia, you know how tough—and emotional—it can be. You’re watching someone you love be robbed of memories and independence. But you are being robbed, too—of the relationship you once had…and of your own life before you became a caregiver.
There is a way to help yourself and your spouse, parent or other relative with dementia. Compassionate, informed care techniques help improve the lifestyles of people with dementia while preserving dignity and safety…which makes your life easier, too. Mastering these “dementia coaching” tactics can help you make a positive, lasting difference in how the disease affects your entire family.
Your goal is to provide the best care to your loved one with less stress. I’ve found that these tips help…
1. Consider yourself a care partner, not a care giver. Individuals newly diagnosed with dementia can live another 20 years—a long time to be giving your time, energy, emotions and/or finances. The word partner recognizes that there are two of you in the relationship.
Changing how you think of your role may ease feelings of resentment and burnout—and help you feel better about taking breaks for your own physical and mental health. It also can improve the relationship.
Example: You know that hanging around the house isn’t good for your spouse with dementia—or you. But your spouse isn’t motivated. Saying, “Honey, you need a walk, let’s go,” makes you feel like you’re working and makes your loved one feel bossed around. Instead, say, “Honey, I would love to go to the movies tonight, but I only want to go if you are with me. Will you join me?” The well spouse wants something and asks the person with dementia to join him/her. It’s about both of them.
2. Remember they’re not stubborn—they’re fighting for independence. It’s natural to want to control a person with dementia, much as you would an infant. But your grown-up loved one has led a rich life, full of experiences and accomplishments. When your concerns overshadow his need to maintain independence, he’ll respond with resistance and frustration. Anyone would—it’s a natural human tendency. Try not to get into a battle of wills.
Example: Your spouse refuses to shower. He may think he already has showered. Instead of arguing, restate the request: “This afternoon we’re going out to lunch with your friend Bill. Let’s make sure we’re ready and look good for our visit!”
3. Dig down to the “why.” Many of the behaviors of individuals who have dementia express an unfulfilled need—a craving to be active, busy, useful or safe…or simple needs such as being hungry, tired or needing to use the bathroom. If she’s rambling on, don’t complain…but do pay attention to clues that might let you know what’s on her mind.
Example: Your wife keeps wandering in and out of the kitchen. She might be hungry—but lacks the words to let you know and may not even be aware of what she wants. Try making her a snack.
4. Stop being right. Or rather, stop insisting that you’re right (even when you are). Let yourself into her world. If your loved one is recounting a story and the details are wrong, just let it be. What is gained by correcting her? If telling the story brings her joy, the facts are less important. If her mistakes are causing disturbing thoughts or behaviors, gently redirect her.
Sometimes reminding a person with great memory loss of hurtful truths can be painful—with no benefit. Telling your dad several times a day that his wife is no longer living is no favor. In these cases, not sharing the truth is more comforting than causing pain over and over. It’s called therapeutic fibbing, aka comfort lies.
Example: Your mother is resisting the idea of a paid caregiver. Rather than introduce someone as an aide, you might say, “Mom, this is Carol. We met at the gym, and she loves baking. I thought the two of you could get together and swap cookie recipes.”
As Carol and your mother spend time together and trust builds, Carol can make suggestions, such as, “I see your pills on the table. Can I grab them for you?” or “I’m going to use the bathroom. But do you want to go first? I can help you.” Your mother will be more receptive.
A dementia coach (or counselor) is someone with expertise in effective caregiving practices for people diagnosed with dementia—who also focuses on the needs of the caregiver. Many are health-care professionals who have worked in dementia care. Some coaches do phone and video/Skype conferencing, so geographic closeness may not be essential.
It’s not an official designation, however—there is no accreditation, and services generally are not covered by insurance. Costs vary widely but range from $175 to $300 an hour. They may be deductible as a medical expense (check with your accountant). Find a dementia coach by searching the web and asking your local hospital or assisted-living facility for recommendations. Look for at least five years of experience working with people who have dementia.
Next, request references—and ask questions, such as…
How does your coaching work?
What are your qualifications as an Alzheimer’s/dementia coach?
How long is each coaching session?
What is your fee?
How many sessions do you recommend?
You should also feel a strong connection with him/her, leaving your first in-person meeting or Skype session feeling hopeful. Your coach can work with both the person who has dementia and with the care partners. Sessions can range from a onetime consultation to weekly visits, depending on your family’s needs and goals.
