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.
- Activities to help with.
- Special notes for children who want to help.
- Remain alert for caregivers who are depressed/ are neglecting their health.
- Additional tips for what can help in situations with high infection risk/ restrictions (like the COVID 19 situation).
- See also….
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.
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.
- Do outside tasks, such as shopping, couriering packets, visiting the post office, laundry drop and pickup, bank work, paying bills, buying medicines, and dropping in cheques at the bank.
- Help in home tasks that do not require talking to the person with dementia. Examples are dusting, cleaning, cooking, and helping with the washing at home.
- Assist the caregiver in researching on dementia care topics.
- Help the caregiver set up the home to make it more suitable for someone with dementia. This may include designing changes, purchasing material, installing what is needed, moving things around the home, and so on.
- Assist the caregiver to take the person with dementia for trips for checkups and other necessary medical activities. You can help by arranging for an ambulance or drive yourself, help to get the person into a wheelchair, support the person to walk or climb, etc.
- Help the person with dementia with activities of daily living.
- Spend time with the person with dementia so that the caregiver can get some time away. For example, sit with the person when the person is sleeping and the caregiver wants to go out for some errands or to make some long phone calls.
- Take over more care work for many hours or even a few days to give a longer respite to the caregiver.
- Help in home nursing of the person with dementia.
- Help support the person walk.
- Help the caregiver gather objects needed for “activities” with the person with dementia.
- Spend some relaxed time with the person with dementia, chatting, listening to music, or even playing games. Be part of doing “meaningful activities” with the person, like folding clothes or sorting papers or shelling peas. This improves the quality of life of the person, and busy caregivers may not have time for it.
- Take the person with dementia for a drive.
- Take the person with dementia for outings. This will require good planning.
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.
- Be available to listen and to provide emotional support to the caregiver.
- Give suggestions to the caregiver for handling the care, and for balancing the several areas of the caregiver’s life.
- Help the caregiver nurture himself/ herself.
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 are listed below.
- Do tasks like shopping.
- Help with the house work like dusting, clearing the house, getting rid of the garbage, and ironing.
- Spend time with the person with dementia. Older persons often like to spend time with their grandchildren.
- Participate in fun “activities” with the person with dementia. These could be things like finger painting, playing with blocks, singing, playing board games, playing a musical instrument, and singing bhajans and old film songs.
- Prepare material for reminiscence and fun activities. Examples are large, labelled albums, collections of objects the person may enjoy touching and seeing, and so on.
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.
Additional tips for what can help in situations with high infection risk/ restrictions (like the COVID 19 situation).
The additional challenges posed by COVID-19 pandemic showed us how important it is to find ways to help caregivers in extreme situations, especially as the caregivers themselves may be seniors or have comorbidities. They need help to be able to do care tasks while also remaining safe themselves, all in a situation where there are infection risks and multiple restrictions, and services may not have caught up with the requirements.
One useful way to help is to handle their digital tasks digitally. So, for example, they can be helped with placing online orders. Information seeking is another area where others can help. Also, CCTV can be set up in their homes or video calls or emergency alarms etc. This could be really useful for families where a single caregiver is looking after someone, and there is a risk that no one outside will know if an accident occurs.
It is important to explore how to empower caregivers. get them comfortable with digital tasks like online ordering, hand-hold them as they learn, and also make sure they know how to stay safe when using the digital world, as there are too many scams happening. Ensure they know how to connect to the outside world using mobiles or laptops – in a safe way.
It is very important to stay connected with caregivers in such times, when they are more confined to home and more likely to be stressed, anxious, or depressed. Isolation can really compound stress. Ensure you keep in touch and stay alert about their state so that you can direct them to suitable online help or counselling if needed. Encourage them to use helplines, telecounselling, online support groups, etc., and point them to reliable resources for this.
If the person with dementia can handle it, help the person and caregiver with using virtual tools for activities and staying connected with people.
The pandemic taught us how important digital literacy can be. Even if there is no crisis, see it you can encourage persons around you, especially seniors, caregivers, and persons showing some cognitive decline, to get comfortable with digital tools in a safe way, so that these are accessible to them if needed later. For example, while it may be risky to put a person with dementia directly online where they may be scammed, they will be more comfortable with online activity sessions and things like video calling if they have been exposed to these before, and will be able to participate in these comfortable while under the care of a caregiver.
Resources/ references on Dementia Care Notes and related sites for above topics.
- Read the discussion here Caregiver emotions and stress to get a better understanding of the situation and ideas on how to help caregivers.
- See the page on Improving the quality of life of someone with dementia for more ideas.
- Read this section for explaining dementia to children.
- Family and relatives can be a major help. The page, Coordinate caregiving between family members, discusses how families can share the work and responsibility.
Some relevant interviews on this site:
• A wishlist with plenty of ideas of what people can do: A caregiver shares her story and wishlist.
• A husband shares ideas on how to support a primary caregiver: Mistakes made, lessons learnt, tips shared.
External links related to the topic.
Some articles with tips on how to help caregivers are listed here. You may need to adapt them for India.
- Alz.org has a very nice pamphlet with tips for helpers at: 10 Ways to Help a Family (PDF file) Opens in new window.
- A list of suggestions is available here: A dozen things you can (and should) do to help people dealing with Alzheimer’s Opens in new window.
- Maya Ramachandran, counsellor, shares lessons from her personal caregiving experience, including things people around them can do to help them: Care for the Caregiver Opens in new window.
Some articles on communicating with persons with dementia and their family caregivers are listed below. These are not India-specific.
- How To Care For The Caregiver – Stress and Burnout Opens in new window.
- 11 Things You Should Never Say To a Caregiver Opens in new window.
- What Not to Do to People with Alzheimer’s Disease- 10 Pet Peeves Opens in new window.
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.
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 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. 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. Read about this book and also see our list of books suggestions at: Books on dementia and care.
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 activities, you can help the caregivers take a break while also make life more pleasant for the person. Two books 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.
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 and as Kindle Opens in new window .
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 and as Kindle Opens in new window .