Caregiver Stress & Depression

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MINDY KIM-MILLER, MD, PhD
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Question:

I worry about my father, who is Mother’s caregiver. She is not to the point of getting 24-hour professional help but is at a stage where leaving her alone is worrisome. Dad is 82 and like many from his generation is very private and doesn’t reach out to others. I am limited in what I can do because he thinks he can/should do it himself. I worry that he is depressed but can’t get him to address this with his doctor. Any suggestions would be very appreciated. My mother is happy — she is loved and doing well from her point-of-view. It is my mother who we grieve over, but it is my father who keeps me up at night with worry.

–Charlotte

Answer:

Your concern about your father is likely very legitimate. Depression and depressive symptoms are extremely common among caregivers to those with dementia. Perhaps your father would be more willing to discuss the topic of depression and caregiving stress if he knew that his feelings are common to many, many caregivers.

Up to 80% of dementia caregivers report very high levels of stress. Caregiving for family members with dementia has been consistently associated with greater levels of depression, anxiety, anger, and psychological distress in comparison to non-caregiving and non-dementia caregiving. One survey found that 61% of AD caregivers report moderate to severe burden levels compared to 46% of non-dementia caregivers. Dementia caregiver stress and burden are closely associated with the care recipients’ behavioral problems and increasing caregiving demand as the disease progresses. So your father’s level of stress will likely increase as your mother’s Alzheimer’s worsens.

Your father is at risk for depression and other psychological and physical issues. High levels of stress and burden on the family caregiver has been associated with poorer health and physical function, poor immune functioning, more illness-related symptoms, and more psychological symptoms such as depression and anxiety compared to noncaregivers or caregivers with lower stress. Many dementia caregivers become “hidden patients” struggling with their own physical and psychological health concerns, because they tend to neglect their own heath issues or delay seeking help.
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Perhaps your father is not willing to see a physician about his possible depression, because he is not aware of his own stress and depressive symptoms. You may need to help him learn about how stress and depression may present.Here are some common, possible symptoms of depression:

  1. Feeling sad, discouraged, or hopeless
  2. Feeling worthless or guilt
  3. Concentration or memory problems
  4. Loss of interest or pleasure
  5. Fatigue or lack of energy
  6. Nervousness or irritability
  7. Inability to sleep or oversleeping
  8. Feeling restless or sluggish with slowed speech and body movements
  9. Appetite or weight changes
  10. Aches and pains such as headaches, backaches, joint pain, stomach pain, diarrhea, and constipation.
  11. Trouble concentrating
  12. Feeling overwhelmed every day
  13. Having trouble sleeping
  14. Changes in appetite or energy
  15. Stomach pain
  16. Headaches

Although you have not yet convinced your father to discuss his possible depression with his physician, you should be persistent. You can try bringing up the topic a little at a time. By planting the seed for further discussions, you may be able to approach this topic again in the future and perhaps get deeper into the discussion. You might also ask your father for a family meeting with all concerned family members to discuss his situation and the family’s options.

Another approach you can take is to convince your father to get a general medical check-up or annual physical examination. He should be getting annual check-ups for general health maintenance and any medical condition he might have. If he agrees to that, you can talk to his physician prior to the appointment and express your concern about possible depression. His physician should be able to screen for depression as part of the general medical visit as well as check for other health issues.

Another option might be to spend time together looking into a resource of information and support, such as the Alzheimer’s Association. Perhaps you can suggest that you and he go to the Alzheimer’s Association to get more information about the disease and support programs. Then when you have your foot in the door, you can also show him information and start a discussion about caregiver stress and depression. If you don’t have time to go to the Association’s office, perhaps you can visit the Alzheimer’s Association website together and use that as a way to start a discussion and gather information. By offering to do these things together, your father may be more willing and ready to get more information and consider the impact that caregiving may be having on him.

In addition to encouraging him to be evaluated for depression, there are other ways to help your father. Your father likely needs help, but like many caregivers, is reluctant to ask for it. Although dementia caregivers consistently report experiencing high caregiver stress, only 11% of surveyed AD caregivers participated in support groups, and 9% used respite services.

Caregivers need to maintain social ties, even though it may be difficult to find the time for social activities. This may require some support from family, friends, or respite services to give the caregiver time to get away. Consider setting aside time for a regular afternoon or evening out for your father. Encourage your father to contact friends and participate in activities he might enjoy, such as playing cards, attending sports events, concerts, a game of pool, or just a chance to talk with others. Isolation can contribute to depression. Try to show your father that he is not alone in his situation and that support systems are available.

There are two types of support systems, informal and formal. People in an informal support system include not only family and friends, but neighbors, church or club members, and volunteers in your community. These people may be willing to listen, give advice, and help lessen the caregiving burden by helping with things such as shopping, errands, cooking, assisting with daily care, and visiting.

Formal support systems include caregiving and skills training programs, professional counseling, respite care, support groups, and religious or faith-based programs. People in your formal support system may include healthcare professionals, community groups, church, or professional agencies that provide assistance or information.

Other ways to help manage stress and depression include getting exercise, participating in daily activities that bring personal joy and meaning, maintaining a journal, and practicing relaxation techniques. There is an abundance of resources on stress management that you and your father could utilize. You two may also find the LightBridge tips for coping with caregiver stress helpful (http://www.lightbridgehealthcare.com/2048.xml).

I hope this helps you and your father.

Dr. Mindy Kim-Miller is a trained medical physician who provides useful, but general answers to questions provided by online visitors. While Dr. Mindy can not provide specific medical advice or services, we hope you find her responses useful in your personal education. All information is provided for informational and educational purposes only and is not meant to be a substitute for professional medical advice, diagnosis or treatment. If you suspect you have an illness or disease, or a health related condition of any kind, seek professional medical care with an appropriate health care professional immediately. Do not postpone or delay seeking treatment or disregard professional advice based upon the general answers provided by Dr. Mindy. Dr. Mindy’s advice is not intended to substitute for a visit to your personal physician or other qualified health provider. Any specific medical concerns or questions you may have should be directed to your personal physician or other qualified health provider.

 

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