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How relatives/ friends/ colleagues can help

The work involved in dementia care is very high and stressful. Primary caregivers cannot handle this alone for so many years. They need help to handle it.

What caregivers and persons around them can do: Friends, relatives, neighbors, and colleagues can try to understand what caregivers are doing and think of ways to help. Even children can help. What others can do for caregivers depends on what they know about dementia care and how much they are willing to learn. It also depends on how much time and energy they have. To see how you can help, talk to the caregivers and find out more. Discuss ways you can contribute.

Information on this page can be used by persons who want to help a caregiver. It can also be used by a caregiver who wants to know what sort of help to ask for, and how.

Things to know in order to help dementia caregivers

To help a dementia caregiver you must first have some appreciation about dementia and care so that you know how to talk to the person with dementia and the caregivers. Often people who want to help mean well, but they say hurtful things without realizing. This is because they do not understand enough about how dementia affects the person, and how much work a caregiver does. (some useful articles for this are listed at the bottom of the page)

Once you get some idea of what dementia is, and how it affects the person with dementia and their family, consider how much time and effort you want to spend to help. Think about the type of help you are comfortable giving. Are you comfortable doing things directly with a person with dementia, such as helping them with some daily task, or spending some time giving them company? Are you ready to learn a lot more about dementia and care in order to help? Or maybe you prefer helping in ways where you don’t have to talk to the person with dementia. Caregivers need help in many activities, so you can always find some place where you can help.

You can, for example, do errands where you don’t need to meet the person at all. For such work, you don’t even need to learn anything either dementia or caregiving. Examples are fetching the laundry, shopping, visiting the bank, and paying utility bills.

If you are thinking of helping with the direct care of the person with dementia, you need some basic knowledge about dementia. For example, you need to know how dementia affects the person’s abilities and behavior, so that you are not surprised or shocked when interacting with the person. To talk to the person, you need some basic communication skills to make sure the person can understand you and you can understand the person. To help with a daily task, you need to know how to offer help, what sort of things to help with, etc. You also need to know more about the likes, dislikes, habits, etc., of the person with dementia. If you are helping the person in the presence of the caregiver, you may not need to know as much. But if you are going to take over dementia care for some time to give the caregiver a break, you need much more knowledge and practice to handle the care. The person with dementia also needs to be used to you.

You can also provide emotional support to the caregiver by being a good listener when the caregiver is stressed. To do this, you must understand the caregiving role well enough to feel empathy, and also be at peace yourself so that listening to the caregiver’s problems and stress does not overwhelm you.

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Activities to help with

Create a care team to share tasks
You and others who would like to share care tasks can form a “care team.” Stay in touch with each other and the caregiver using technology like Whatsapp, or some special app. The caregiver can use this small, local forum to tell you the tasks she wants help with, and you and others can pick up the tasks you can do, and coordinate between yourselves.

Here are some ideas on how to support the caregiver. You can also ask the caregivers what they want help with, and then discuss what you can do. Start with simple, do-able activities that give immediate benefit to the caregiver. Leave more complex activities for later. Complex help often requires better understanding, better coordination, and more practice. Try these only after you have been able to help in simple ways and you are sure you want to do much more.

Basically, there are many ways you can help. It is possible to help at different levels of your time and energy and at different levels of how much you interact with the person with dementia.

There is one additional, very important area you can help in: directly help the caregiver in self-care:

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Special notes for children who want to help

craft book made by grandchild for dementia person

One page of a small book made by a grandchild by
sticking pictures and labelling them. The grandchild
spends time going through these pictures with
the grandparent, who has dementia.

Children can also help. For this, first they need to understand dementia. The resource section below includes pointers to discussions for explaining dementia to children.

Some ways children can help:

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Remain alert for caregivers who are depressed/ are neglecting their health

Caregivers often do not ask for help. They may hide their stress. They may be so busy that they neglect their own health. They may even reach a state of helplessness or extreme depression and not know how to get out of it and ask for help.

Be alert about this and offer a helping hand in time. If the caregiver is skipping their own health checkups, see what you can do to make sure they get time to go for their checkups. Or even offer to take them to a doctor.

If you feel the caregiver is very dejected, think about what you can do for it. Maybe you are not comfortable talking with someone who is very dejected; this may make you be critical or dismissive of the caregiver, and will make things worse. If the caregiver is depressed, and if you cannot talk to or help them, look for other friends and relatives who can help instead of you. Try to understand their situation and possible problems better to find appropriate ways in which you can help, given your own skills and your time and energy. (see resources below for articles to read).

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See also….

Resources/ references on Dementia Care Notes and related sites for above topics

Some relevant interviews on this site:

External links related to the topic

Some articles with tips on how to help caregivers (you may need to adapt them for India):

Some articles on communicating with persons with dementia and their family caregivers are listed below (these are not India-specific):

Books: Anyone keen to help persons with dementia/ caregivers can get an idea of how to help by understanding more about dementia and its care. Many books include tips to caregivers on how to get help, and concerned persons can use this to know what sort of help to offer.

36 hr book cover and link [20]
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 classic book includes a chapter ‘Getting Outside Help’ which has suggestions on how caregivers can get help from outsiders. You can use this chapter to know what sort of help you can offer. The help you offer and the way you offer it has to be suitable for your cultural setting, so suggestions in the book may need to be adapted. For the paperback version, see Amazon.comOpens in new window [21] (6th ed), or, if you are in India, see Amazon.inOpens in new window [22] (6th 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 [23] or Amazon.inOpens in new window [24].

One way of helping is by “activities” done with the person with dementia, which give a sense of joy and meaningfulness. By taking on some such avtivties, you can help the caregivers take a break while also make life more pleasant for the person. Two books that have been specifically recommended by some persons for this are listed below. They have received good reviews but have not been evaluated by us. You can read the book descriptions, reviews, and samples on a site like Amazon to decide whether they would be helpful.

cover of ctivities to Do with Your Parent Who Has Alzheimer's Dementia [25]
Activities to Do with Your Parent Who Has Alzheimer’s Dementia (Judith A. Levy) Provides a selection of user-friendly activities intended to help maintain the parent’s self-care skills, mobility, and socialization. The book includes an Assessment Form. While not all of the book’s over fifty activity ideas may help a caregiver, some ideas may be usable. Available on Amazon.in as paperback Opens in new window [25] and ” as Kindle Opens in new window [26].

cover of Creating Moments of Joy [27]
Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers, Fifth Edition, Revised and Expanded (Jolene Brackey). This well-rated book contains practical advice on how to focus energies on creating moments of joy for persons with dementia. Reviewers have found it easy to read and with enough usable ideas and full of hope and enthusiasm. Available on Amazon.in as paperback Opens in new window [27] and ” as Kindle Opens in new window [28].

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