Caregivers and Depression

Family members provide most of the care for older adults with Alzheimer’s disease and other dementias. Some families enlist many members and work together as a team, while other families may only have one member providing most or all of the care. Some families choose to hire help for part or all of the time. Some families will keep the person with dementia at home for the entire course of the illness, while others will find it better to have the person live in a care setting designed for people with Alzheimer’s disease. There is no one right way to care for a person with dementia.

It can be very comforting to know that you are doing the best you can for your relative. Caregiving can create a new purpose in a life, and strengthen the relationship between the person providing care and the one receiving it. However, research has found that family caregivers of relatives with Alzheimer’s disease are at high risk for psychological distress in general, and depressive symptoms in particular. Caregivers often were leading busy lives before their relatives needed their help, and become overloaded with the additional responsibilities. They sometimes leave their jobs or curtail their working hours, limit contact with friends and find it difficult to engage in social activities because of the demands of caregiving.

A study conducted by one of NYCARE’s partners, the NYU Alzheimer’s Disease Center, demonstrated the long-lasting psychological benefits of seeking counseling and support. The intervention they have been studying since 1987, with NIA funding, includes six sessions of individual and family counseling followed by participation in a support group affiliated with the Alzheimer’s Association and the availability of advice from counselors on the phone when needed. This had a very long-lasting effect - depressive symptoms were significantly alleviated for more than 3 years. Apparently, the benefits that started in the counseling sessions led to changes that many families made in the way they interacted afterwards.

What are symptoms of caregiver stress?

• Fatigue, headaches, sleep and stomach problems, feeling overloaded and that
  you have no time for yourself.
• Anger, depression, anxiety or grief that occurs frequently or lasts more than a few days.
• Thoughts about violence against the person for whom you are caring.
• Changes in your relationships – with the person you care for, with friends and
  with family members.
• • Excessive use of alcohol, tobacco or drugs.

What can you do to alleviate stress and depression?

• Learn about Alzheimer’s disease, and how it affects the person with dementia.
  This can help you understand why your relative behaves the way she or he does,
  and think of ways to respond to symptoms of AD symptoms appropriately, with less
  stress to both you and the person with the illness.
• Explain the patient’s symptoms to family and friends.
• Try to keep up relationships with others and have some time away from the
  person with dementia.
• Ask your family and friends for the kind of help you need, keeping in mind what they are
  likely to be able to provide. Sometimes regular contact by telephone with friends and
  family can be emotionally supportive, and make caregiving easier.
• Make use of the resources available to you through the Alzheimer’s Association
  and other community organizations, such as counseling and support groups.
• Find activities appropriate to the remaining abilities of the person with dementia.
  This can provide respite for you and stimulation for your relative. Possible examples
  are senior centers, day care centers and local community centers.

Practical tips for Alzheimer’s Caregivers

• Take it one day at a time – regretting the past or fearing the future only makes things worse.
• Set realistic goals for yourself and for the person with Alzheimer’s disease. Keep
  in mind that things won’t always go smoothly.
• Break down large tasks into simple step-by step actions.
• To help make basic caregiving chores less stressful, try to give yourself enough time for them.
• Stick to a daily routine – if you do the same things at the same time, they can seem
  more manageable.
• Take time for yourself.
• Try to do things that lift your spirits.
• Attend to your own physical health.

Further Readings for Caregivers
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life.
Mace NL, Rabins PV. Warner Books, New York, rev. ed. 2001.

The Alzheimer’s Health Care Handbook: How to Get the Best Medical Care for Your Relative with Alzheimer’s Disease, in and Out of the Hospital
Mary S. Mittelman and Cynthia Epstein, Marlowe & Co., New York, 2003.

If you are still experiencing persistent feelings of sadness or feeling “blue,” have a change in your eating pattern, have difficulty sleeping, and have less interest in your usual daily activities for more than two weeks, you should consult with a health care professional. You might be suffering from clinical depression. Depression is often undiagnosed and untreated, especially in the elderly. The good news is that depression is treatable with a variety of approaches including medication, psychotherapy, and with the supportive measures mentioned above. A caregiver with a history of depression should be aware that the stress of caregiving could cause a recurrence of a depressive episode.

Alzheimer’s disease is a progressive condition, and if you are a family caregiver, you have chosen to help someone live through it. Never forget to praise yourself for your efforts and the care you have given. Forgive yourself for your mistakes. It is okay to feel angry and frustrated. Recognize that you are facing many obstacles and doing all you can to help a person with Alzheimer’s disease. It is important to acknowledge when you are feeling overwhelmed and experiencing depressive symptoms. Seeking help from health care professionals may be necessary for depression that lasts more than two weeks. You may find it helpful to seek support and opportunities to share your feelings, such as joining a support group. The Alzheimer’s Association has many support groups throughout the New York metropolitan area that meet regularly and are available at no charge. Remember to think about yourself and your needs – “caregivers” need care, too.

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