Promoting the Mental Health of Those
Who Live with Dementia

By Kimberly J. Curyto, PhD

When your loved one has a dementia such as Alzheimer's disease, it may be difficult at times to know what they are experiencing. It may be hard for someone with dementia to communicate how they feel or what they need, since their ability to use words declines as the disease progresses. Someone in the mid- to late-stage of dementia depends on those caring for them to meet their emotional needs as well as their physical needs. They rely more on their caregivers to take steps to connect with them and maintain their sense of who they are. If you are a caregiver, it is important to try to understand what your loved one needs and how they are feeling.

As a family member of a person with dementia, you may notice changes in your loved one but are unsure of whether they are a typical part of the disease. In fact, a number of symptoms that are common in depression are also common in dementia. For example, favorite activities may seem too much trouble and the person with dementia may withdraw from relationships and social groups as their ability to remember, start activities, and organize information declines. This is similar behavior in a person experiencing depression.

Depression is very common in people with dementia and can make it even more difficult to remember, function, and enjoy life. Approximately one-third of persons with dementia may experience an episode of depression. In fact, men and women with Alzheimer's disease become depressed with the same frequency, again about one out of every three. This is different than depression in those who don't have dementia, where women are more likely to become depressed than men.

Instead of relying on your loved one with dementia to tell you about how they are feeling, look for nonverbal signs.

Observing the signs of emotions in someone can help identify when they are feeling sad, anxious, angry, happy, or interested (see Signs of Emotions). Your loved one's expressions and behavior can help identify which activities and approaches to care are enjoyable, meaningful, and comfortable, as well as those that are forced, uncomfortable, or threatening. Observing emotion can also help caregivers identify anxiety or depression in someone with dementia. For example, is your loved one's facial expression frequently sad, with their eyes looking downward?

Pay attention to other observable signs of depression. Do they avoid doing usual activities, being with people, or moving from one position? Are they refusing to help with personal care (such as getting dressed or taking medication)? Your loved one may say things that suggest they are feeling worthless or sad. Someone who is depressed may also refuse to eat and lose weight. Sleeping all the time or not sleeping enough can also be a sign of depression. Other signs include crying, being unusually emotional, and being angry or agitated.

If you think depression may be a problem for your loved one, discuss your concerns with their physician. A physician can provide a thorough physical exam, ensuring that medications or physical illness are not contributing to the depression. They may prescribe antidepressant medications that can be very effective in treating depression in people who have dementia. Or they may refer to a mental health specialist at Pine Rest's Senior Care Clinic (616/222-4500) or other office for further treatment.

Support groups and professional counseling can help those who are depressed and in the early- to mid-stages of Alzheimer's disease, before communication skills have declined significantly. Increasing activities that exercise the mind and the body may also help alleviate depression. This includes activities such as taking a class, doing a crossword puzzle, volunteering, taking walks, participating in a yoga or tai chi class, or doing stretches and light exercises. Reconnecting your loved one with people and activities they have always enjoyed, even if it can only be done through reminiscing, can help improve their mood.

As someone's ability to think and remember declines, their ability to understand and respond appropriately to a situation becomes impaired, often leading to troublesome behaviors. Because persons with dementia can have problems with language and problem-solving, their experience of depression and anxiety often takes the form of behavioral "acting out," or what professionals call "need-driven behaviors."

The description "need-driven behavior" is a very helpful one because we believe that all behavior is a way to fulfill a need even if we can't understand that need yet. If a person with pretty good language abilities has a need of some sort, they typically will talk about that need. If a person has a need and their language ability is impaired, they may try to express that need through their behavior. This can be troubling because it seems as if the person with dementia is distressed. As a caregiver, trying to get a 'read' on what is going on or what the "need" is can be tricky.

Strategies to cope with cognitive changes that come with dementia can prevent the chronic stress and loss of control that can lead to need-driven behaviors. Keeping a daily routine can help produce a sense of predictability and security. Caregivers can ensure their loved one is not overly-fatigued or over-stimulated, and respond by limiting the amount of noise and activity around them. Adjusting expectations to match the capabilities of someone with dementia is also important to help avoid frustration.

When need-driven behaviors occur in someone with dementia, it is important to try to understand why they are happening. It is necessary to document what happens before and after the behavior occurs to provide clues to the need being expressed or the goal being pursued. This allows those caring for your loved one to meet their needs and keep them safe. For example, Ms. Smith, who has had dementia for about six years, pushes at her caregiver when he tries to get her to go to the dining room to eat; she even screams sometimes. When she pushes and yells, her caregivers give up and she stops screaming. The problem behavior only happens when they walk down the hall that is not carpeted and is waxed to a shine. Her caregivers notice signs of anxiety and fear in Ms. Smith during these times and they think she may be afraid the floors are wet. They try a different route through a carpeted room, and softly reassure Ms. Smith that she is safe. Ms. Smith is much less resistive to coming to the dining room.

Mental health professionals with expertise in aging and dementia such as those at Pine Rest's Senior Care Clinic (616/222-4500) can help address need-driven behaviors. They may provide treatment of depression or anxiety if they are the cause, or refer to the Dementia Living Center (616/222- 4515), a short-term residential behavior program designed for those experiencing dementia and significant need-driven behavior that cannot be treated in the individual's residence.

It is important to address the needs behind challenging behaviors and treat depression in someone with dementia. By learning how to recognize emotions, understand what behavior is communicating, and obtaining professional help, your loved one's quality of life can be improved. And remember to take care of yourself, too. The mental well-being of your loved one is greatly impacted by the well-being of their caregiver.