Coordinate dementia care with family members

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Different family members have different ideas about how to take care of someone with dementia.

What caregivers can do: Discuss care openly within the family. Plan together. Keep everyone involved and informed. Build trust. Share the status and problems regularly. Talk openly and honestly. Understand everyone’s views, and discuss the differences.

Care for someone with dementia goes on for many years. Family members try to share the work and costs but don’t always manage to do this well. One family member may end up doing much more work than others. There could be anger and mistrust. Problems usually happen because family members don’t discuss the care and plan together.

Sections on this page:

How families typically share the care work.

Usually when someone is diagnosed with dementia, the persons already living with the person start doing the care. This could be the spouse or a child. If the person is living alone, the family members living nearby try to help the person.

When care starts becoming more complex, the arrangement may change. Family members with more time or a bigger house or more money may take over the care. Families may share the work by taking turns to care for the person with dementia. Sometimes the person moves from one child’s home to the home of another child. Even within a single home, there is a “primary caregiver” while others help sometimes or during emergencies.

A family has many members who are concerned about the person with dementia. They may not all be living together. The primary caregiver, others in the same home, and family members living outside, all have their own ideas of how to care for the person. They also try to share the work and costs of the care.

However, many families do not talk about how they will share the work and costs across the years. Problems arise within family members living with the person, and between them and the family members living separately. Some typical problems are described in the following section. Most of the disagreements happen between the live-in caregivers and the distant family members, especially if they have never taken care of the person with dementia.

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Typical problems between family members.

The live-in caregivers and other family members caregivers do not talk openly.

The live-in caregiver is often busy and may not explain the situation to the distant family members. The distant family members don’t know how much caregiving work is needed. They may not try to stay in touch and ask questions.

When the primary caregiver is the husband or wife of the person with dementia, the communication gap is often larger. They don’t want to depend on their children. They consider it their duty to take care of the person alone. They may feel that talking about the problems reduces their dignity.

Live-in caregivers and distant caregivers criticize and blame each other.

Distant family members often feel unhappy about how care is being done. They start listing mistakes the live-in caregiver made and begin explaining how to improve care. They may say the person does not look happy and blame the caregiver. Distant family members are more critical if they have never handled any day-to-day care of the person. They may also be critical if they are in a country that has good systems for dementia care. Sometimes, some family members have cared for the person earlier and don’t realize that the person’s dementia is now worse. They feel the caregiver is making mistakes and not trying hard enough.

Live-in caregivers are also critical of distant family members. They blame them for not doing their share of the work. They dismiss suggestions given by them. They may even refuse to tell them details when asked.

The references given below include links to stories of family problems caused by criticism and misunderstandings.

Family members disagree about the person’s state.

When the distant family members visit, they see the situation in a very different way from the live-in caregivers.

Visiting children often find the person affectionate and normal. The person seems eager to talk and go out. The person may even complain about the live-in caregiver. Complaints may include not being given proper food, being denied use of the bathroom, not having outings, etc. The visiting children may therefore feel that the live-in caregivers are being cruel to the person.

The spouse or children living with the person feel let down by the person. They know the complaints are not true. It surprises and hurts them to see the person being alert and loving with the visitors. As soon as the visitors leave, the person acts even more irritated with them. This makes them feel unloved and taken-for-granted.

This happens because in many types of dementia, while persons have memory loss, their social skills remain okay till a later stage. They know what sort of behavior to show visitors, and exert themselves to seem “normal”. This effort tires them and as soon as the visitors leave, the persons are exhausted and extremely difficult to handle. An article describing this is included in the references on this page.

Because the person with dementia acts in different ways in the presence of visitors, the distant family members and the live-in caregivers think of the person’s state differently.

Live-in caregivers do not ask for help.

Live-in caregivers hesitate to ask others for help. They feel others find fault or are not interested in helping. As a result, the live-in caregivers have too much work and also get isolated from the family. They have no support even when unwell.

Distant family members don’t stay in touch.

Distant family members may break contact because they feel ignored. They think their suggestions are unwelcome. They may think the caregiver is rigid and wants to exclude them.

Family members who contribute money ask for accounts and this results in unpleasantness.

In many families, the family members who live far away try to help by sending money. They want the caregivers to use the money for care-related expenses, and may ask questions on how it was spent. They may feel the caregivers are overspending their money.

Care work has many types of expenses. Some expenses may seem unnecessary to outsiders. Some may not seem related to care. Live-in caregivers don’t usually keep detailed accounts and don’t like being asked to explain what the money is spent on. If the distant family members insist on details or say something critical, they feel humiliated and angry.

Suspicions and mistrust over the person’s money and property.

Persons with dementia often have problems handling money or make mistakes in investments. So family members help them manage their investments, property, and tax. This often causes major misunderstandings. A power of attorney favoring one child is seen as a way to grab the money. If one child wants to sell off the person’s property saying the money is needed for care, others think it is an excuse to grab the money. Suspicions around handling money and property are very common.

There are also instances when these conflicts and suspicions lead to court cases. See [see also] for some links around this.

Old conflicts between brothers and sisters affect care.

Every family has some old problems between brothers and sisters. These start as childhood fights and jealousy. These problems reduce when the children begin living separately. But old tensions may rise again when the children discuss how to care for their parent. Also, the children may now be quite different in terms of education, money, and social status. This makes honest discussion more difficult.

One child ends up doing much more work than others, and this may feel unfair.

Such problems are more usual when the person with dementia cannot be moved between children. It is especially seen in late stage care. The person stays with one child all through the advanced stage of dementia, which may last several months or even years. This care requires major adjustments and is stressful. It may be too much for one child to handle alone.

Discussions are more difficult when the primary caregiver is the spouse of the person with dementia.

Sometimes the primary care is given by the husband or wife of the person. The children may be in the same house or living separately. Spouse caregivers often do not discuss the situation openly. They may hide the person’s problems, and not let children know how tired or upset they are with the day-to-day care. So the children may not know how difficult the situation is.

Children often find it difficult to discuss care of one parent with the other parent. A discussion may be seen as “negative.” Children hesitate to do anything that seems like insisting or arguing with a parent. They cannot talk of how the dementia will get worse because the caregiving parent refuses to talk of such things.

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How family members can plan the care together.

If families plan the care together, everyone involved is more comfortable and better informed. The live-in caregivers can get help from others. Other family members feel involved and can participate. Ideas are exchanged. The work, costs, and responsibility are shared better.

To plan together, family members need to understand what dementia is, and how it will affect the person. They need to know what sort of care will be needed. The caregivers providing the care may need a better understanding than others, but everyone needs to know enough to talk about things and make decisions.

Here are some important things to plan for.

(Note that if there is a situation like the pandemic, then travel poses a higher infection risk. Also, there may be restrictions like multiple testing to be done, masks, and quarantine and all this can be very disorienting for someone with dementia. In such a situation, it may not be possible to divide care work by moving the person with dementia between cities from the home of one child to that or another.)

Decide where the person will live at which stage of dementia: A typical approach is to move the person from one child’s home to another child’s home; this spreads the care work across children. But this arrangement does not always work, for many reasons.

  • Persons with dementia have their own preferences and may be more used to one place.
  • They may get confused or frightened if asked to move every few months. Their abilities may get worse with each move.
  • Some children may not be able to have the person in their home. For example, their job may not leave enough time to take care of the person. Their apartment may be small. They may have small children or unwell persons at home, and adding someone with dementia may result in too much stress for everyone. The child may be in a country for which it is not possible to get the required visa and insurance.
  • Persons in late-stage dementia cannot be moved easily.

Share expenses: Dementia care goes on for many years. Families must see how they can share the costs. These are not just for the medicines but many other things like attendants and services. The live-in caregiver may have to make changes to the house, and also give up a job and other opportunities to be able to take care of the person wit dementia. Other children need to see how they can support this. Children who cannot have the person stay with them may decide to pay for most of the expenses.

family conflict over dementia end-of-life decision on tube feeding

Decide about medical and nursing care: Different family members have different views about what is good care. Families can discuss the pros and cons of various possibilities to decide what to do.

End-of-life care discussions are particularly important. These include topics like tube feeding, giving antibiotics, and using hospitals. Discussions must be held early to reduce confusion, disagreements, and hurt.

Decisions on care include decisions on whether to place the person in a 24×7 care home.

Decide how to handle the person’s investments, properties, tax, etc.: The person may have investments and may be a tax-payer. As dementia advances, the person cannot handle these responsibilities alone. Some family member needs to help or take over this work. Family members need to decide who will do the person’s investment management, paying tax, and filing returns. They must discuss how they will handle the person’s money and property. Misunderstandings over money matters can often divide a family and break trust.

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Suggestions for live-in caregivers.

If you are a live-in caregiver, you may feel tired of the work and also feel you are alone. You may feel others do not care enough. You may hesitate to ask for help, and as a result, becoming even more tired.

You probably want the family to share the work and worries, but don’t know how to make this happen. Here are some things you can do:

Change how you view the ignorance and comments of other family members. A lot of the unhappiness and mistrust is because you expect family members to know what you are doing and going through, and their words and actions disappoint and hurt you. If you can change your view about them, you may find it easier to explain things to them and get their support. Understand that their ideas and support will be needed by you, even if the support is not as complete as you want it to be.

Some thoughts you can try:

  • My brothers and sisters may be worried about Amma even if they are not here to take care. It’s a pity they are not here to help me, but I cannot blame them for living in a different place. Such blaming does not help me.
  • I will need their help when the dementia gets worse. If I stay in touch and on good terms I may get some support then.
  • I don’t lose anything by listening to their suggestions. Some suggestions may be useless, but some may be useful. I don’ want to miss anything that can help.
  • It took me a long time to understand dementia and what I need to do.  I made mistakes while I was till understanding. They also need time to understand what is going on here. I should not get upset at their ignorance.
  • I am often too tired to think because I am always busy with this care work. Maybe they will have some fresh and better ideas because they are less tired.
  • They say they want to help. Even if they cannot help in everything, there may be some things I can ask them to do. Let me at least think about it.
  • In late-stage dementia, we will all need to decide things together. If we stop talking to each other, how will we discuss things like tube feeding? We should be able to trust each other and talk calmly, and if I stay angry with them, that will not happen.
  • If something happens to me, they will have to take over the work. I must stay in touch and keep them informed otherwise we will really have a problem when they have to take over.

Make a special effort to explain dementia and get the family to plan together.

Do not think that time spent explaining is a waste. Think of it as companionship. Be patient. Remember that they need time to understand and believe what you are saying. Provide them authoritative, “neutral” sources,  like books and links to sites. Describe personal incidents to help them understand. Refer them to mutual friends who have experienced something similar.

Take the initiative to get the family together to discuss the care and related decisions. The sections above give some idea of what you can discuss with them. Remember that explanations may have to be given several times. With each discussion, other family members will start thinking about how this care can affect their own decisions on where to stay, their jobs, savings, and other things, as they now know they may need to share work and costs.

Give regular updates and stay alert on family misunderstandings: Give family members regular news about the situation and a realistic, matter-of-fact picture of the person’s state. Let them know about ups and downs and how things keep changing. They will not be surprised when you start needing more help or money. They will also feel more involved. Regular updates increase a feeling of trust.

Keep the amount of detail suitable. Less detail does not give a real feeling of what is going on. Too much detail is unnecessary.

Include your own care-related problems in the updates. Again, do not add too much detail. But do not pretend there are no problems.

Avoid exaggeration and drama, and try not to appear as if you are complaining all the time.

Welcome their comments, and suggestions. If they give a good suggestion, show appreciation for it. Do not feel bad because you didn’t think of it yourself. If their suggestion seems impractical, discuss what you find good in it and also why it is not practical. Do not view suggestions as criticism or blame.

Don’t let dementia care be the only topic you talk about when meeting family members. Ask them about their lives. They may not tell you about their problems unless they feel you will listen. Knowing more about them will also reduce any disappointment you may feel because they are unable to help you. Communication between family members is not just about dementia care.

While you may all have met in the beginning to discuss care, that is not enough. Suggest more meetings when needed.

Also, stay alert on problems such as other family members being unhappy or suspicious, or when they do not believe you. Try to solve the problems as soon as you notice them. If you feel bad about something, discuss this before it affects your relationship. Work towards building trust. Some topics are often a reason for bitterness, such as money matters. Be open about them. Do your part in making sure such things don’t divide the family.

Know when to stop making the effort. You are helping the person every day. This requires work as well as making small decisions all the time. In addition to this, you are trying to stay connected with other family members. If you find other family members are unfriendly or critical in spite of your efforts, you may decide not to spend more time and energy with them. Try to make other respected family members and friends explain the situation to them. If that also does not work, just focus on the care. Do not let your ability to take care be affected by critical siblings.

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Suggestions for distant caregivers.

If you live at a distance, you may find it difficult to know enough about the situation. You may feel you are being excluded. You may be unhappy with the way care is being given. You may even think you should break off.

You probably want to be involved and to help in the care. You want to share the work and worries, but don’t know how to make this happen. Here are some things you can do:

Change how you view the situation and comments of the live-in caregivers. A lot of the unhappiness and mistrust is because you have not experienced the care situation yourself and are not able to understand what is going on. You may feel the situation couldn’t be as bad as you are told it is, and that the caregivers are being negative or complaining.

You are not living with the person, so you don’t know the situation well enough. You may have looked after the person earlier, but things may have changed. Or you may have visited the person and not seen the behavior the caregiver talks of and so you think the caregiver is exaggerating or lying. Do not assume that what you see on short visits makes you an expert on the person and on caregiving. Things are different when they have to be handled 24 x 7. Consider that the caregiver may be giving a truthful picture.

Be constructive and helpful in family meetings where care is discussed. Prepare for such meetings by first getting a realistic understanding of how dementia may be affecting the person. Try to understand what care involves. Just reading a brochure or two cannot give you that idea. Read some books and other material. Read and listen to caregiver interviews, and so on. Try some thought experiments. Get a realistic idea of the state of dementia awareness and support in India. You may then find it easier to get involved and contribute to care planning.

Find practical ways to share the work and costs. Maybe you can take your turn in actual care work, when the person with dementia moves in with you for some time, or when you go and stay with the person while the primary caregiver takes a break. Or you can participate by helping with non-care tasks and errands. Or you can help by giving money, listening and supporting, etc.

Stay in touch with the caregiver and offer help and suggestions as relevant. Your involvement is not just for the planning stage. Take the initiative to stay in touch with the caregiver and to see if more help is needed. Live-in caregivers may not ask for help. Be alert about their stress and workload to see what you can do. Be available as a listener because caregivers often need emotional support.

Be especially alert about misunderstandings and mistrust and discuss and clarify as early as possible so that the relationship does not get worse.

When you hear the caregiver talk, or when you are thinking about the situation, you may have some comments and suggestions. Be careful when giving suggestions. Your words and actions should not sound like blame or criticism. Be careful to express enough appreciation and positive thoughts about what the caregiver is doing. Any blame can cause the caregivers to break contact and stop listening to you. It adds to their stress and makes matters worse.

Also, the live-in caregiver may be too busy to notice that the family needs to talk again about care decisions. Remain alert on changes and take the initiative to ask for a family meeting if the care situation needs such a meeting.

If you suspect neglect or abuse, gather facts first. You may feel the live-in caregiver is neglecting or hurting the person. You may have based this on a stray remark or observation, or on accusations of the person with dementia or others. Be very careful and look at all the data. Remember that persons with dementia could be complaining because of delusions and confusion. Also, do not underestimate the effort of the care being given. If you have not handled such work before, you have no reason to think you could do it better. Things always look easier at a distance.

If, after checking carefully, you believe that the live-in caregivers are unable to give proper care, don’t fight with them. That does not help. Instead, look for ways to solve the problem of giving proper care to the person.

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Suggestions to involve the youngsters.

All family members are affected when someone develops dementia. But often families do not explain dementia to young children. They think the children will not understand or that it is bad for children to know about such problems.

Young children may get alarmed by the behavior of someone with dementia. They are worried when they see the grandparent look confused or get angry. As the strange behavior and memory loss increases, children get frightened, and may start staying away. They may even copy the way adults around them show irritation or anger at the person. This can be avoided.

Dementia explanations can be adjusted to suit the age of the child (age-appropriate explanations). Children are able to understand dementia. They usually accept things as well or better than adult caregivers, and are able to show love and patience to the grandparent. They will also understand why the adults in the house are busy with the care and not get upset by it. They will not feel excluded and alone.

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Communication is key: Stay in touch.

As the discussion above shows, it is very important to share information and status updates, and to discuss the situation and possible actions. This is essential to coordinate the work and avoid misunderstanding. Fortunately nowadays, technology makes it easier to stay in touch. In addition to visiting and meeting in person, you can stay in touch even when you are at separate locations. Some options:

  • Voice or video chat, such as using Skype, Google Meeting, ZOOM, and other such platforms. This makes it simple to have discussions between persons at two places. It also lets remote family members see and talk to the person with dementia, so that they have a realistic understanding of the situation. Caregiving approach and decisions can be discussed.
  • Conference calls. These are useful when family members are spread across more than two locations. Many free and paid services are available for this.
  • Whatsapp groups. You can create a group of family members, so that all of you can post at any time you want, and share information or discuss as convenient.
  • Others. There are many other technology-enabled ways, too, like private Facebook groups/ messenger, emails, email groups, etc.

Select whatever most family members are comfortable using and find most convenient.

When travel restrictions were imposed due to the COVID 19 pandemic, and with quarantine rules, and fears of infection, families started using technology more often to stay in touch. Many families now use various available platforms (at least the free versions) to video chat regularly. On the other hand, the home visits are less likely if major travel is involved.

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See also….

Resources/ references from Dementia Care Notes and related sites.

Pages on related topics on this site:

Some relevant interviews on this site:
• Families in denial: Siblings failing to coordinate care because of denial.
• Example of a family that coordinated care A son talks of supporting his caregiver mother .
• Misunderstandings between siblings while coordinating care and taking decisions: Conflicts between siblings.
• Family manages to coordinate care though siblings don’t always agree: Long distance caregiving challenges and approach.

External links related to topics discussed above.

Some articles and newspaper reports on family discussions, misunderstandings, conflicts and court cases are given below.

Explain dementia to children.

Articles: For teens Opens in new window, For kidsOpens in new window, dementia and children Opens in new window and how to tell your children Opens in new window.

Caregivers can use books to see how to explain dementia to children. See our list of suggested books for explaining dementia to children at: Books on dementia and care. There are also many books that have useful discussions related to family coordination.

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