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Caregiver emotions and stress

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.

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, 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

Here are some things that can help:

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.

To get help, consider the following:

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 explains 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.

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See also….

Resources/ references from Dementia Care Notes and related sites

Some relevant interviews on this site:

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 [15]

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 [16].

Some overview of caregiver situation in India: The Dementia India Report 2010 (PDF file) Opens in new window [17]

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. The following books have some specially good discussions on the topic (of course, suggestions would need to be tuned for your cultural setting and available support systems). Check out the books mentioned below, or surf Amazon.com Opens in new window [21] or Amazon.in Opens in new window [22] for your specific needs.

36 hr book cover and link [23]
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (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. For the paperback version, see Amazon.comOpens in new window [24] (6th ed), or, if you are in India, see Amazon.inOpens in new window [25] (6th ed) or FlipkartOpens in new window [26] (5th ed) or any other vendor.

This book is also available as a Kindle eBook. Read the book or sample right away on your laptop, tablet, or Kindle by checking it (6th ed) at Amazon.comOpens in new window [27] or Amazon.inOpens in new window [28].

howard book cover and link [29]
Alzheimer’s: A Caregiver’s Guide and Sourcebook, 3rd Edition (Howard Gruetzner): This book is particularly good for its discussions on caregiver emotions and stress, and devotes a couple of chapters to caregiver depression and coping with ongoing stress. It also discusses how families can coordinate for care. For the paperback version, see Amazon.comOpens in new window [30], or, if you are in India, see Amazon.inOpens in new window [31] or FlipkartOpens in new window [32] or any other vendor.

This book is also available as a Kindle eBook. Read the book or sample right away on your laptop, tablet, or Kindle by checking it at Amazon.comOpens in new window [29] or Amazon.inOpens in new window [33].

steps book cover and link [34]
When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver(Susan M McCurry): This book suggests an approach that caregivers can consider to improve their sense of well-being and fulfilment while meeting their caregiving responsibilities. It focuses on improving quality of life by using the tools explained, nurturing oneself, and being open to creativity and enjoyment. For the paperback version, see Amazon.comOpens in new window [35], or, if you are in India, see Amazon.inOpens in new window [36] or FlipkartOpens in new window [37] or any other vendor.

This book is also available as a Kindle eBook. Read the book or sample right away on your laptop, tablet, or Kindle by checking it at Amazon.comOpens in new window [34] or Amazon.inOpens in new window [38].

(You can also see our list of books suggestions at: Books on dementia and care [39]

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Page/ post last updated on: November 1, 2018

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