Alzheimer’s Association Answers Common Caregiver Questions

November is National Family Caregivers Month. There are more than 11 million family caregivers in the U.S., and nearly half of these caregivers provide help to someone with Alzheimer’s or another dementia. Here in North Carolina, there are 373,000 caregivers who provide 723 million hours of unpaid care valued at $10.9 billion.  

Why is Alzheimer’s called a family disease?

A diagnosis of Alzheimer’s disease or another dementia impacts the entire family. It exacts a considerable emotional, mental, physical, and financial toll on families, particularly primary caregivers. At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief, and sadness. The experience can be overwhelming and place an incredible strain on families. 

Why is caring for someone with Alzheimer’s or another dementia challenging?

Caring for a person with Alzheimer’s takes longer, lasts longer, is more personal and intrusive, and takes a heavy toll on the health of the caregivers themselves. The average life expectancy following a diagnosis is 4-8 years, but it can be as long as 20. Since Alzheimer’s is a progressive disease, caregiving tasks escalate and become more intensive. During the course of the disease, Alzheimer’s caregivers are often managing multiple conditions, including memory loss, loss of mobility, reduced communication skills, and behavioral and personality changes. Fifty-nine percent of Alzheimer’s caregivers report their emotional stress as high or very high, and 35% report declining health because of caregiving. 

What are some important initial steps individuals and families can take following an Alzheimer’s or dementia diagnosis? 

It is important for diagnosed individuals and their families to educate themselves about the disease, including disease symptoms, disease progression, and common challenges facing caregivers. The more you know, the better able you are to plan for the future, including the ability to make informed decisions about future care planning as well as legal and financial matters. The Alzheimer’s Association website, alz.org, offers robust disease-related information, including online and in-person education programs and other resources that can help.

How can caregivers help preserve the dignity of their loved one as AD progresses?

It is important for affected individuals and their families to develop strategies that will enable the person to live their best life possible. This will look different for different people based on their needs and priorities. In addition, these strategies will change as the disease progresses.

In the early stage of the disease, individuals may still enjoy many of the activities that they enjoyed prior to diagnosis — whether it is going out to dinner, entertaining friends, exercising, or listening to music. As the disease progresses, it is important to adapt these activities accordingly. Throughout the course of the disease, it is important to look for ways to engage the person that are meaningful and appropriate for the individual based on their likes and preferences. Find activities that meet the person where they are in that moment and help them enjoy life with dignity.

How can family caregivers take care of themselves?

It’s important that caregivers not isolate themselves. Connecting with other caregivers and support organizations can help you find the information, resources and emotional support needed to help stay physically and emotionally strong so you can take care of yourself while you provide care to others. As hard as it may be, caregivers need to make their health and well-being an equal priority. Sustained caregiver stress can lead to caregiver burnout – a state of physical, emotional, and mental exhaustion. Caregivers who experience burnout put their own health at risk and compromise their ability to care for someone else.

No one needs to go through this disease alone. The Alzheimer’s Association has local offices in communities across the country, and we are here to help. In addition, the Alzheimer’s Association offers a 24-7 Helpline (800.272.3900), staffed by Master-level clinicians that are available day and night to help family caregivers navigate disease-related challenges.

What can you do to support Alzheimer’s and dementia caregivers? 

Many caregivers are reluctant to ask for help — they are either too overwhelmed or they feel that caring for their loved one is their responsibility. Be proactive in offering help. Run errands, help with a household chore, give caregivers a break by spending time with the person with dementia, and educate yourself about the disease – the more you know, the easier it will be to help. Even an hour or two can make a big difference in providing the caregiver some relief.

For more information on caregiving and managing caregiver stress visit ALZ.ORG or for a list of our educational programs and local support groups, visit act.alz.org/NCmonthlyprograms.