Caring for someone living with Alzheimer’s disease or dementia can be a challenging responsibility and emotionally draining at times, especially as the disease progresses and the patient’s ability to manage daily tasks declines. In commemoration of National Alzheimer’s Awareness Month and National Caregivers Month, On Lok – a pioneer and world leader in Programs for All-inclusive Care for the Elderly (PACE) – recognizes the caregivers who take on the important role of caring for a loved one suffering from Alzheimer’s disease or dementia.
According to the Alzheimer’s Association, in 2016, almost 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias. About two-thirds of caregivers are women, and 34 percent are age 65 or older. Also, approximately one quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
When faced with the responsibility of caring for a loved one with Alzheimer’s or dementia, many caregivers may find themselves in a new and unfamiliar role. In some cases, caregivers are concerned about their ability to care for the person living with Alzheimer’s or dementia, especially as the disease progresses and other medical issues surface. However, by taking necessary steps, caregivers can help the person living with Alzheimer’s or dementia maintain a sense of independence and at the same time reduce their own level of stress and anxiety. When caring for a loved one, consider the following:
- Don’t unnecessarily disrupt the routine. For example, although the caregiver might benefit from a vacation, a person with dementia may become increasingly confused in the new environment.
- Be aware of drastic mood changes. Although dementia patients do have “good days” and “bad days,” any dramatic or persistent change should be brought to the attention of the doctor. It may reflect a medication side-effect, or an illness like a bladder infection or pneumonia.
- Work with the doctor to minimize medication. Dementia patients are particularly susceptible to side-effects, and many medications that might make sense in a healthy elderly person really are not appropriate for a person with a progressive dementia.
- Don’t give multiple step instructions. Asking a person with dementia to first do this, then that, then this, will never work. Ask them to do the first part of the task. When complete, ask for the next step. Do not rely on their memory, which of course is impaired by their illness.
- Be sure they can hear and see you when you talk to them. If they use hearing aids, make sure they are in, the battery is not dead and that they work. If they use glasses, make sure they are clean and they are worn. When communicating, make sure there is adequate light, so the person with dementia can see well. Also, minimize distracting noises, such as a TV droning in the background.
Jay Luxenberg, M.D., is chief medical doctor at On Lok Lifeways, and has served as co-chair of the Alzheimer’s/Dementia Expert Panel for the Mayor’s office, City and County of San Francisco.
On Lok Lifeways (part of the On Lok family of senior services) is a comprehensive health plan that provides long-term care for eligible seniors living in San Francisco and parts of the Bay Area. The program offers full medical care and support services with the goal of helping seniors live at home and in the community for as long as possible.