Advice for Alzheimer's Caregivers

May 2, 2016
Amy Zerba

Alzheimer’s not only alters the lives of people with the disease but also the lives of those who care for them. The journey can be just as emotionally and physically demanding for caregivers, but that mental and physical stress is often overlooked because the focus is on the patient.

When Geri Taylor, 72, learned she had Alzheimer’s, her husband, Jim, became “uncommunicative for two weeks,” he said. Then they sat together, talked it through and planned out their next steps, they told N. R. Kleinfield of The New York Times in his article “Fraying at the Edges.” The disease, in an unexpected way, strengthened their marriage, Mr. Taylor said.

The Times asked Dr. Mary Mittelman, a research professor of psychiatry and director of the Alzheimer’s and Related Dementias Family Support Program at NYU Langone Medical Center, and Cynthia Epstein, a clinical researcher and social worker at the center, to answer a few questions that people might have when caring for someone with Alzheimer’s, a leading cause of dementia. They collaborated to provide these responses.

Do you have any tips on how to better communicate with a person who has Alzheimer’s?

Successful communication strategies should be attuned to the stage of dementia. As the illness progresses, verbal communication may become more difficult. Caregivers can communicate through body language, tone of voice, choice of words (concrete rather than symbolic) and appropriate touch. The behavior of the person with dementia is a form of communication that a person learns to understand with familiarity and patience.

How can others help someone with memory loss?

To make others more comfortable in engaging with someone with memory loss, let them know that the person has dementia, and share the strategies you have learned to improve communication. Depending on the stage of the illness, there are many ways that others can interact with a person with dementia. For example, if you are at a party, and the person no longer remembers your name, asking the person to dance could be an alternative to talking.

How should a caregiver respond if a loved one with Alzheimer’s or dementia is showing signs of hallucinations, delusions or paranoia?

Those all can be symptoms of dementia. People with dementia may accuse others of taking misplaced belongings, because they are unaware that they cannot remember where they put them.

If the hallucinations and delusions do not cause distress, it may be best to go along with them, rather than to try to convince the person that they are not real. If they do cause distress, then caregivers may want to acknowledge the fear they are causing and take practical steps, like altering the lighting and the environment to avoid any triggers. For example, bunched-up clothes may look like a monster or a portrait may appear to be a real person. In some cases, a physician may recommend prudent use of medication when other responses fail.

What can be done in a home to make it more comfortable for someone with Alzheimer’s?

It is best to make changes in the home when the person is in the early stage and can adjust to them. Remove scatter rugs and extension cords that can be tripped over, fragile ornaments that can inadvertently be broken and valuable items that can be misplaced. That can reduce not only accidents, but also stress and arguments. Provide good lighting that does not create confusing shadows, and play soft music to create a calm environment.

In later stages of dementia, providing chairs that are easy to get in and out of, labeling the door of the restroom and offering a quiet nook distant from TV noise can improve comfort and functionality.

What are ways to deal with a loved one with Alzheimer’s who is currently angry or agitated?

Try to stay calm, rather than meeting anger with anger. Anger or agitationmay be expressions of pain or confusion or a need the person cannot express verbally. If you suspect unaddressed illness or pain, a doctor should be consulted. It is not easy for a person with dementia to identify the source of distress, so it will take knowledge of the person and perhaps a little detective work to respond effectively. If nothing seems to be wrong, the symptoms may abate if you distract the person by offering food or suggesting a walk.

How can wandering be prevented?

In the person’s home, lock doors, disguise them or use a device to alert the caregiver that the door has been opened. Stops can prevent windows from being open enough to allow a person to exit. When away from home, it is essential to be vigilant, as a person can quickly wander off. All people with dementia should wear an identification bracelet or pendant, so that if they do wander, they can be found.

What can be done to help someone with Alzheimer’s cope with depression and other mental health issues?

Sometimes, what appears to be depression is caused by boredom, isolation and a lack of suitable stimulating activities. The activities that the person enjoyed before becoming ill can be modified. New activities may also help. For example, a person can join a chorus or participate in dementia-friendly museum programs. If the symptoms persist, a mental health professional can evaluate the possible causes of depression and other mental health issues. Psychotherapy can be effective with people in the early stage of Alzheimer’s. In some cases, medication may be helpful.

How can caregivers take better care of their own well-being?

Caregivers must take care of themselves, as they too often become entirely focused on the person for whom they are caring. Research conducted at NYU Langone found that the emotional and practical support received from family and friends led to significantly fewer symptoms of depression and stress and better physical health of the caregivers. The study also found that those caregivers were able to keep their relatives with dementia at home for a year and a half longer than those who did not receive support. Recognition of the effectiveness of supporting family caregivers has led to new and expanded programs to improve their quality of life.