Quality Dementia Care is a Family Affair

Alzheimer's Association
Sunday, 16 July 2000

Families Must View Themselves as Partners in Care

When it comes to their loved ones' health care, many families are too timid and trusting, an Alzheimer expert cautioned hundreds of family caregivers here today at World Alzheimer Congress 2000.

"Overwhelmed and exhausted by caregiving responsibilities, most Alzheimer family caregivers are not particularly savvy health care consumers," said Melanie Chavin, MS, MT-BC, program director for the Alzheimer's Association Greater Chicagoland Chapter. "Instead of gratefully settling for whatever level of quality they can get, family caregivers need to view themselves as partners with their loved one's health care professionals."

As partners in care, family members and health care professionals can work together to provide a high-quality environment and experience for the person with Alzheimer's disease.

"Family members have both the right and responsibility to advocate for their loved one with Alzheimer's disease," said Stephen McConnell, vice president of public policy and program services for the Alzheimer's Association (U.S.A.). "The Alzheimer's Association can help empower family caregivers by arming them with needed information and support."

According to Chavin, the following tips will help family members get their loved one the best possible care from home health agencies, physicians, nursing homes and assisted living facilities:

1. Become an educated consumer. As soon as your loved one is diagnosed with dementia, learn as much as you can about their condition. Learn as much as you can about the disease, care options, available treatments, Medicaid and Medicare and how to identify quality care. Educate yourself about available resources, including web sites that rate nursing homes and assisted living facilities. This type of information will make you an educated consumer and will ensure that you are not making decisions in a "crisis" mode.

2. Learn to be assertive. Stating your concerns and backing them up with facts, instead of emotions, is critical. Use your Alzheimer's disease knowledge to offer solutions when possible. For example, if the facility is deficient in an area, speak with the appropriate staff person, state the problem and suggest that they contact their local Alzheimer's Association to get staff training and assistance in that area. A facility dedicated to quality care and customer service should welcome this sort of feedback.

3. Share what you know. You can help professional caregivers by giving them information about your loved one's habits, interests and dislikes. This type of information can help them make the care your family member receives more personal and effective.

4. Become involved in your local Alzheimer's Association. Your local chapter can educate you about Alzheimer's disease, quality care, how to choose a long-term care facility, and they can offer referrals to appropriate services and facilities. You also can work with them to have an active role in Alzheimer public policy issues on the local, state and federal levels to improve the care available.

5. Know that you have a choice in long-term care facilities. Finding an appropriate facility is a process, not a split-second decision. Don't be dazzled by the appearance of the facility—the relationship the staff has with the residents is the single most important quality determinant. Visit during busy hours to accurately gauge how staff interacts with residents. Are they kind? Are they patient? Is the facility chaotic and noisy? Do residents look happy?

6. Be realistic about your expectations. No one can provide your loved one with exactly the same kind of loving and personal care you can—there are some limitations.

7. Don't forget to give a "pat on the back" when you are happy with your family member's care. Everyone likes a compliment. If you genuinely feel pleased with the care your family member is receiving, let the caregiver and his or her supervisor know.

8. Take care of yourself. As your loved one's advocate, you have a responsibility to keep yourself healthy—physically and emotionally. Be sure you eat well and are well rested. Ask family members, neighbors and friends for help if you need it!

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org