Caregiver emotions and stress

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Dementia caregiving is emotionally and physically stressful.

What caregivers can do: Understand that most caregivers are stressed by this work. Get tips on how to take care of yourself. Use support groups to share stories and tips. Learn how to relax and take some time for yourself. Look for help before getting too overwhelmed.

Stressed and tired caregivers often neglect their own health and well-being. They may not even consult doctors for their own illnesses. They feel cut off from friends and relatives, and do not know how to ask for help.

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Dementia care causes stress.

Caregivers sometimes feel that they must be doing something wrong if they are feeling tired or stressed. In addition to the stress they already feel, they think they are not good caregivers. But experts have explained that dementia care is the most stressful type of caregiving and that many dementia caregivers suffer from depression.

Several published reports and studies explain the stressful nature of dementia care. They point out that dementia care is different from other care in many ways. For example, it lasts for many years. Though India has a strong family system, caregivers do not get enough support. Levels of caregiver strain in India are as high as in developed countries in spite of extended family networks and home care. Also, dementia awareness is poor in India. While the symptoms of dementia are widely recognized here, they are considered a normal and anticipated part of ageing. They are not seen as symptoms that indicate a serious medical condition. When outsiders they see persons with dementia wandering, calling out, or making accusations, they think the family is neglecting or abusing the person. Caregivers have to take care of the person, coping with behavioral problems and incontinence and soiling, etc., and also face the stigma and blame. Lack of support even from local health services makes this worse. Family conflict is also common.

Reports explain that most caregivers have significant decline in their mental health. Depression is higher in dementia caregivers compared to other caregivers, and a study has shown that one fifth to one third of carers had significant psychological illnesses. (You can check your stress level or read papers on this topic using the links at the bottom of this page.)

If you are a caregiver and feeling stressed, please know that feeling overwhelmed and stressed is very normal.

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Some ways to reduce stress.

Caregiving for someone with dementia is stressful, especially because caregivers have to balance dementia care with multiple other roles and responsibilities. There may also be a significant increase of stress during crisis situations, such as situations like a pandemic or some serious illnesses or major changes in home and work environments, life choices, restrictions, etc. Worse, the usual coping mechanisms may no longer be feasible at such times (like caregivers may not be able to go for a walk or coffee or movie for a break), and other options (including digital) may need to be explored. In any high-stress situation, self-care becomes even more important, and caregivers will need to be creative to find practical doable actions that are safe and can be fitted into the stressful day.

Here are some things that can help:

  • Plan for self-care just as you plan for care for the person with dementia.
    • For example, plan so that you can get nutritious food even when tired and unable to cook. Keep the phone numbers of home deliveries and catering neighbors. Include some physical activity in your day even if you cannot leave home. Buy things you need for this, like exercise mats, videos, hand-weights, stretch bands, etc. Locate doctors who can come home for you when you fall ill.
    • Make arrangements for finances and legal matters. Problems with taxes and legal work can be a big stressor. So if the person with dementia is a joint holder for some accounts, discuss with a consultant on whether this could become a problem for some procedures when the person declines more cognitively. Look at all the legal documents like power of attorney documents. Make changes in them before the care work increases so much that you cannot leave home.
  • Look at your care-related work carefully. See which type of work is most tiring for you. Try to get help and support for at least those tasks.
    • If the total amount of work is tiring, consider using attendants, or see if you can leave the person with dementia for some hours at a day-care facility.
    • If you are stressed because you feel emotionally hurt, find ways to cope with that. Meditation type of things may help.
    • If the person’s changed behavior is very difficult to handle, find ways to resolve the behavior and also try not to take this behavior personally. This is a difficult adjustment, and support groups and counseling may help.
    • You may feel stressed because you are trying too hard. When things don’t improve, you get frustrated. Maybe you expect improvement in the dementia symptoms, and don’t find any. This type of stress is related to unrealistic expectations. Reduce this by accepting the nature of dementia and its progression.
  • Avoid a feeling of isolation by becoming part of communities like online forums or in-person support groups.
  • Take breaks by using facilities like day care and respite care.
  • Ask friends, family, and colleagues for help. Even if they cannot help with direct care work, they may be able to do some errands for you.
  • Take care of your health. Eat tasty and nutritious food. Do enough exercise. Meditate. Stressed caregivers often forget to take care of themselves. This reduces their energy levels and increases stress.
caregiver stress relief by books music funny movies friends gift dance vacation

Take out time to do something you enjoy. At least some things you like can be done even when you are home-bound, with some minor planning and adjustment. Read your favorite books, see a funny movie, listen to music. Go out to meet friends at a nearby coffee shop. Attend a performance, and if you cannot go out, buy the video or watch a recording on YouTube. Buy something nice for yourself. Ask friends to help you to take a break. See if you can use services like day care and respite care to get some “me-time”.

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Tips on seeking help.

There are many reasons that people do not offer help.

  • They may not know you need help.
  • They do not know how to help. They may not think of what they can do for us. They may not think you will welcome their help.
  • They may find it overwhelming to see someone with dementia. They may not want to help with the care work, and may not think that there are other things they can help with.

To get help, consider the following:

  • Let people know more about the impact of dementia and the amount of work in caregiving.
  • Make sure they know you need help.
  • If people make unsuitable suggestions, express gratitude for their having tried to help. Do not dismiss it outright. Gently explain why the suggestion is not suitable.
  • Ask for help for specific tasks, keeping in mind the type of person offering help.
    • For persons who seem uncomfortable seeing someone with dementia or interacting with them, choose errands that need to be done and do not require interacting.
  • Let people know of the types of things you need help for. Then they can decide what they want to offer to do.
  • Try not to sound like you are complaining.
  • Ask for emotional support only from persons who understand the situation and are comfortable listening to you. Sometimes overwhelmed caregivers talk to everyone they meet about their problems. But most people cannot handle this and start backing off. Be careful about whom you expect emotional help from.

In general, use most people for tasks that need to be done and get some direct relief from work. To get emotional support, select a few persons who can listen without judgment and who understand and are empathetic.

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The importance of support groups and forums.

You can get support and reduce stress by using online forums and in-person support groups where you can interact with others who understand the situation.

Most people in India do not understand dementia care. They do not appreciate caregiver stress, and are not able to help even if they really want to. They do not consider a dementia diagnosis as indicating a serious medical condition. They think of the person with dementia like they would think of a typical elder, and so their advice is often unsuitable for dementia care. For example, they may insist that you should explain complex things to someone with dementia who may not be able to understand them. They may suggest more outings and variety. Listening to such advice just adds to the caregiver’s sense of isolation. Actually using it may make the situation worse.

Dementia support groups, however, have persons like you, facing similar situations. People can talk openly and share problems and tips. When you participate in such a group, you realize you are not alone. You can talk without getting lectured about how looking after elders is a duty. Some suggestions you get here are very creative and helpful and may reduce some area of your stress.

Most Indian cities do not have in-person support groups. Even if such groups are there, you may not be able to attend the meetings because of the distance. Or the timing may not suit you. Or you may not have someone who will look after the person with dementia when you go to the meeting. But even if you cannot go for a meeting, you can participate in online forums. Many caregivers exchange problems and suggestions in online forums. You can enroll in them and post problems or seek advice. Some even allow anonymous participation.

Information on city-wise dementia support resources is available in the references section at the bottom of the page.

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If you are feeling really anxious, sad, or depressed.

Sometimes, you may be extremely anxious, sad, or depressed.

Many caregivers don’t talk about their problems even to close friends and relatives because they face criticism or very unrealistic advice. The “joint family system” often fails to give support. There are often misunderstandings and conflicts even within the family.

There may be many reasons why you have reached a state where you are so anxious or disheartened that you don’t see how you can get out of it. You may suspect you are severely depressed but don’t know what to do about it.

If so, consider talking to a counselor or psychiatrist. Do not despair if you don’t know any counselor. Do not worry if you cannot leave home to go and meet a counselor or you are worried about privacy and confidentiality. Even from your home, without anyone else knowing, you can use phones and email to contact organizations that help persons in distress. These organizations have trained volunteers who give confidential help to persons who feel alone, depressed, and even suicidal. Contact them as soon as you feel you need help. You don’t have to wait till you are totally overwhelmed to reach out for such help. See the references section at the bottom of the page for resources for such help.

With telemedicine picking up, many more options are available for telecounselling now. More helplines are available. Also, many organizations regularly arrange online sessions, webinars, and group sessions that can help caregivers connect with others and get some support.

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See also….

Resources/ references from Dementia Care Notes and related sites.

Some relevant interviews on this site:
• Finding fulfilment, facing bereavement; a husband talks: She would simply hold on to me for support .
• On the stress of caregiving: Caregiving challenges, trained ayahs, depression .
• Coping with extreme challenges: Father thought I wanted to kill him .

For resources in India:

External links to possibly useful resources for this page topic.

One particularly useful external resource is: Coping with Emotions and Stress in Alzheimer’s Caregiving: A Resource List Opens in new window.

An additional link: Maya Ramachandran, a counsellor, shares lessons from her personal caregiving experience, including things caregivers can consider and do to cope better emotionally and reduce their stress: Care for the Caregiver Opens in new window.

Sites to check for caregiver stress levels (the checks and the suggestions are designed for other countries and may not be directly usable for India):

Caregiver stress is a well-recognized problem and covered in any good book on dementia caregiving. One recommended read is The 36–Hour Day – A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss (Nancy L Mace, Peter V Rabins): This is a classic, must-read book and covers a range of topics. Caregiver emotions and taking care of yourself are addressed specifically in two chapters. Of course, suggestions would need to be tuned for your cultural setting and available support systems. Available as paperback and Kindle on Amazon (older versions may be just as helpful).

You can read about this book and also see our list of books suggestions at: Books on dementia and care.

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Dementia Care Notes