Caregiving in the Late Stages of Alzheimer’s Disease

by Kendra Binger, Alzheimer’s Association

Alzheimer’s can take a devastating toll on caregivers, especially in the later stages. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties.

As symptoms worsen, the care required of family members can result in increased emotional stress and depression; new or exacerbated health problems; and depleted income and finances due in part to disruptions in employment and paying for health care or other services for themselves and their care recipients.

As a caregiver working around the clock for your loved one, you face special challenges.

What to Expect
As the disease advances, the needs of the person living with Alzheimer’s will change and deepen. A person with late-stage Alzheimer’s usually:

• Has difficulty eating and swallowing
• Needs assistance walking and eventually is unable to walk
• Needs full-time help with personal care
• Is vulnerable to infections, especially pneumonia
• Loses the ability to communicate with words

Your Role as a Caregiver
During this stage, your role focuses on preserving quality of life and dignity. Although a person in the late stage of Alzheimer’s typically loses the ability to talk and express needs, research tells us some core of the person’s self may remain. This means you may be able to continue to connect.

At this point in the disease, the world is primarily experienced through the senses. You can express your caring through touch, sound, sight, taste and smell. For example, try:

• Playing his or her favorite music
• Reading portions of books that have meaning for the person
• Looking at old photos together
• Preparing a favorite food
• Rubbing lotion with a favorite scent into the skin
• Brushing the person’s hair
• Sitting outside together on a nice day

Late-stage Care Options
Deciding on late-stage care can be one of the most difficult decisions families face. Families who have been through the process tell us that it’s best to gather information and move forward, rather than second guessing decisions after the fact.

There are many good ways to provide quality care. Remember, regardless of where the care takes place, the decision is about making sure the person receives the care needed.

• Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the care needed.
• At the end of life, another option is hospice. The underlying philosophy of hospice focuses on quality and dignity by providing comfort, care and support services for people with terminal illnesses and their families. To qualify for hospice benefits under Medicare, a physician must diagnosis the person with Alzheimer’s disease as having less than six months to live.

Ideally, discussions about end-of-life care wishes should take place while the person with the dementia still has the capacity to make decisions and share wishes about life-sustaining treatment.

If you are caring for a loved one with dementia, know that you’re not alone. The Alzheimer’s Association is here to help and has many resources available to help ease the challenges of caregiving:

• 24/7 Helpline: (800) 272-3900
• Caregiver Center
• Support groups
• Education classes and online training
• ALZConnected – online message boards
• Care consultations
• Tips for late-stage caregivers

The road ahead may seem long and overwhelming, but the Alzheimer’s Association is ready to answer your questions and connect you with financial and legal experts through their 24/7 Helpline (800) 272-3900. You don’t have to face this disease alone.

Kendra Binger has been with the Minnesota-North Dakota chapter of the Alzheimer’s Association for six years, currently serving as a program director in the Fargo office. Kendra studied sociology and gerontology at Luther College in Decorah, Iowa, and Minnesota State University-Mankato. Kendra’s related experience includes activity programming for long-term care facilities in the Fargo-Moorhead area, as well as home care and nursing assistant services. Kendra works with families, caregivers and professionals in southeast North Dakota to provide care consultations, education and outreach to the medical community.