Caring for a family member with Alzheimer’s disease

Alzheimer’s disease is becoming more common and more recognized in our country. About 6 million Americans are suffering with this chronic, progressive, incurable disease and their families and friends suffer alongside of them. The Elizabeth Hospice staff provide families with guidance and education when caring for their loved ones to ensure that patients not suffer needlessly, especially when patients can no longer verbalize their needs or are physically inactive. 

The hallmarks of the disease, and of other dementias, are an impaired ability to think and carry out mental tasks, known as cognitive decline. Physical decline also occurs, since the affected organ, the brain, controls the whole body. Some physical symptoms include loss of bladder and bowel control, falls, serious infections such as pneumonia, skin pressure sores and weight loss due to a diminished desire to eat and drink.

The average survival of patients, after Alzheimer’s is detected, is eight to 10 years. Some factors influencing survival include the person’s overall health before diagnosis and the quality of the care received after diagnosis.

There is no doubt that patients will need increasing caregiving to keep them as healthy and happy as possible. Great caregiving also ensures that the dignity of the loved ones will be maintained. Treating them in a very dignified manner is critical as they become more and more dependent on family members and other caregivers.

Families are often heroic in taking care of their loved ones who have dementia. Truly, roles are reversed with children often caring for parents who had previously cared for them. It is very important to spread the caregiver burden between family members, as best as possible. Sometimes, families will hire caregivers to ease the load.

All of this is important to avoid what is known as “caregiver burnout.” Burnout occurs when one or two people assume all the responsibility for the wellbeing of a patient with dementia. The intense work and the diminished positive feedback as the patient recognizes family less and less are a powerful combination that can dampen enthusiasm and motivation.

Besides assigning caregiver responsibilities to multiple family members and hiring caregivers, some families use other strategies to avoid burnout. One is the use of day programs. Day programs can give the dementia patient a change of pace and interaction with caring, trained professionals who offer appropriate mental stimulation and fun activities.

Respite periods can be crucial for families. During a respite period, a person with dementia will spend three to five days or more in a dementia facility to give families some time off to regroup, recreate, retreat or take a much needed vacation.

Sometimes, families become so overwhelmed that they place their loved ones in facilities permanently. In these cases, I recommend moving as many familiar objects, scents and sounds to the new living place. Frequent visits by family members are also very important.

I always tell families to talk and read to their family members who have dementia. Assume they hear and understand more than they indicate. Singing and music can be especially powerful. It seems that the part of the brain that processes music remains intact, deep into the disease. 

Remember, if your loved one has Alzheimer’s disease or another type of dementia, you are not alone. For more information, please call The Elizabeth Hospice at 800-797-2050.

Dr. Delgado is board certified in family medicine and hospice and palliative medicine, a fellow of the American Academy of Family Medicine and The Elizabeth Hospice Chief Medical Officer and Pediatric Hospice Program Medical Director.