5 Helpful Things to Know for Alzheimer’s Caregivers

Support becomes more important as challenges increase

A caregiver holds the hand of an elderly Alzheimer's Disease patient.

Support becomes more important as challenges increase

Spouses, children, other family members and friends often take on the responsibilities for caring for a loved one living with Alzheimer’s disease, the most common form of dementia.

About six million people have Alzheimer’s disease in the United States and the numbers continue to grow. Most affected are 65 and older and many need care.

More than 16 million adult family caregivers provide care for someone with Alzheimer’s or another form of dementia.

Support for caregivers is important because of the many challenges that they face caring for loved ones with a progressive, memory loss brain disease. Many caregivers are often caring for their own families, working and tending to their own needs.

“Caring for a loved one with Alzheimer’s disease is a labor of love but it can be overwhelming,” says Gregory Sahagian, MD, a neurologist at Scripps.

Caring for a loved one in need can be rewarding as well. Caregiving makes a big difference in the quality of life of someone living with Alzheimer's. But it’s important for caregivers to take care of themselves so they can provide the best care for their loved one.

Here are five things to know about Alzheimer’s and caregiving:

1.     When are caregivers most needed?

On average, Alzheimer’s progresses over a period of nine or 10 years from onset to severe disability and death. Some cases will advance much more quickly, while others may go on for more than 15 years. There is no cure for Alzheimer's disease.

Unless the family can employ a professional caregiver, caregiving responsibilities often go to the spouse, children, other family members and friends.

A person in the early stages of dementia may need help keeping appointments, remembering names or words, recalling familiar places or people, managing money, keeping track of medications, planning or organizing.

The role of the caregiver increases as the disease progresses and functioning becomes more difficult for the person with Alzheimer’s. “Because Alzheimer’s is a degenerative disease, it becomes markedly worse over time,” says Dr. Sahagian.

Eventually, Alzheimer’s robs people of their ability to perform basic day-to-day activities. Caregivers must work to ensure that patients are eating properly, caring for their personal hygiene and not endangering themselves.

2.     How do I start if I’m new to caregiving?

Caregivers may not know where to start at first, but they have many available resources to help them.

Community organizations and hospitals can often help caregivers learn the skills and knowledge needed to help someone with dementia. They can help find in-home and day care services, obtain specialized medical care and get legal assistance. The Elder Locator, a public service of the US Administration on Aging, can help find many of these resources.

It’s really important to develop a good understanding of the patient’s health issues and other needs.

“Caring for a person with dementia means not only physically helping with their daily needs, but often handling financial and legal matters, such as wills, advance directives and medical costs,” says Dr. Sahagian.

It can be helpful to know where their important papers are stored in case they are needed. A doctor or social worker can also advise how to make their home easier and safer to live in.

3.     How can I help with caregiving if I live far?

If you live far from a person with Alzheimer’s but you want to help, your role may vary. You may not be the primary caregiver but can help in many ways.

If working with a primary caregiver, ask how you can be most helpful. You can help with finances or arrange for in-home care or provide short-term relief for primary caregivers. You may help by researching health problems or medicines and keeping friends updated.

4.    What can happen if a caregiver is affected by stress?

Caregivers who provide significant care can be at risk for physical and emotional health problems.

If stress makes the caregiver sick, both caregiver and patient suffer. The patient will struggle and may have to be placed in a full-time care facility.

When caregivers learn to effectively manage stress, both they and their patients benefit.

“Whenever I treat patients with Alzheimer’s, I automatically consider their spouses or caregivers to be my patients as well,” says Dr. Sahagian. “I ask how they are doing and what kind of help they need to make their roles easier.”

5.     What can caregivers do to help manage stress?

Taking care of yourself is one of the most important things you can do as a caregiver.

“In addition to caring for their patients, it is vital for caregivers to take care of their own health,” says Dr. Sahagian. “They need to eat well, exercise, get enough sleep, and be able to take breaks from their responsibilities and enjoy personal time.”

Always ask for help when you need it. Check in with friends or join a support group that meets in person or online.

A good place to start looking for help is the Alzheimer’s Association’s Caregiver Center, which has a 24-hour helpline at 1-800-272-3900.

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