Receiving a diagnosis of Alzheimer’s disease or other form of dementia is life-changing, not only for your loved one who’s diagnosed but also for yourself.
Being an Alzheimer’s caregiver is a full-time responsibility, one that challenges you physically, mentally, and emotionally. As such, you need to prepare for how to meet your loved one’s needs while also maintaining your own health so you can remain an effective care partner.
“I approach individuals with dementia in dyads because you have a person who has a diagnosis, and then you have to worry about the person taking care of them,” explains Ronan Factora, MD, a Cleveland Clinic geriatrician. “Studies show that Alzheimer’s caregivers are at risk for poor health outcomes, often because of the stress and also because they ignore their own needs.”
Starting as a Dementia Caregiver
Initially, you and your loved one should learn about their dementia and how it progresses. Talk with a geriatric specialist about what needs will arise, and establish goals of care moving forward, such as preserving your loved one’s function and independence and enabling them to remain at home as long as possible.
This is also the time to consult an elder law attorney to review advance directives (e.g., living wills, durable power of attorney for finances), be named as a health-care proxy responsible for making health-care decisions for your loved one, and outline his or her end-of-life health-care preferences. Review all of your loved one’s personal assets, and set up autopay to handle credit card, utility, and loan/mortgage payments.
Support for Alzheimer’s Caregivers
As your loved one’s dementia advances, you’ll need to assist them in completing everyday tasks, such as managing medications and finances, driving, and keeping track of medical appointments. Eventually, you’ll be called upon to take care of household and personal tasks like cooking, cleaning, doing laundry, and helping your loved one dress and maintain his or her personal hygiene.
Before you reach this point, seek support from family members and friends, and identify who can assist with these important tasks. If you are unable to muster sufficient help, have your physician or a social worker connect you with community services. Many of these agencies provide respite care, offering a break for dementia caregivers so they can run errands or simply rest.
“You have to understand what your limits are and not be afraid to seek assistance,” Dr. Factora says. “It’s like being asked to lift a car on your own. People know that this is a hard lift, so they’ll help you out.”
Take Care of the Alzheimer’s Caregiver
It’s easy to become so focused on your role as a dementia caregiver that you ignore your own needs, including your health. Be sure to keep regular appointments with your physician, and work to optimize your blood pressure, cholesterol, blood sugar, weight, sleep, stress, and other aspects of your health.
Maintain good physical fitness so you can handle the added responsibilities around the house. Aim to get at least 150 minutes of moderate-intensity aerobic exercise per week, and perform strength-training exercises on at least two or three nonconsecutive days a week. Have your loved one participate with you in exercise whenever possible. “It can be beneficial for a person with cognitive impairment or dementia to stay moving,” Dr. Factora says. “You want to keep them as stimulated as possible.”
Being an Alzheimer’s caregiver can be emotionally taxing, so don’t hesitate to seek counseling from a mental health professional. That’s especially important if your loved one exhibits behavioral changes associated with dementia, such as becoming aggressive, verbally abusive, accusatory, or paranoid, Dr. Factora advises. Ask a health-care professional about medications and other strategies that can help. “Those behaviors will change the way you view your loved one,” he says. “You have to realize that this is not the person you’ve known for years. This is the dementia talking.”
Visit the Alzheimer’s Association website, alz.org, to find online or in-person support groups that let you share your experiences with others and learn from theirs, as well. You can also find links to services in your area that help you care for your loved one while also addressing your own needs.
“If you take care of your health and your mental well-being, you’re going to be better prepared to take care of someone who has dementia,” Dr. Factora says. “It’s going to be stressful and it’s going to take a toll on you, but you’re going to be better off.
“The thing that most people want to avoid is going to a nursing home, and the best way to do that is to make sure their needs are met at home with a combination of what you as a dementia caregiver can provide and any agencies that help support a person at home.”
Use this checklist as a guide if a loved one is diagnosed with dementia:
□ Review short-term and long-term caregiving needs and goals with your loved one, family and physicians.
□ Establish a network of family and friends who can offer support when needed.
□ Complete and review advance directives (living will, health-care proxy, durable power of attorney for finances) with your loved one and family members.
□ Set up autopay for credit card/utility bills; review financial assets, properties, etc.
□ Arrange for assistance with transportation.
□ Keep scheduled doctor’s appointments; ask the physician about medications that may manage dementia symptoms or slow Alzheimer’s progression.
□ Use a pill box or blister packaging to manage your loved one’s medications.
□ Talk to a social worker and/or physician about community services available to assist with housework, bathing/hygiene assistance, and meal preparation (visit mealsonwheelsamerica.org).
□ Ask about respite care services, which can provide you with a break from caregiving to run errands or simply rest and relax.
□ Have your loved one carry a card with his/her address, phone number, and an emergency contact number.
□ Take care of your own health. Follow a heart-healthy diet, get at least 30 minutes of moderate-intensity physical activity per day, aim for at least seven hours of sleep per night, and stay as socially engaged as possible.
□ Join a dementia support group, consider one-on-one counseling, or call the Alzheimer’s Association 24-hour support helpline at 800-272-3900.
