A family discussion on sharing caregiving responsibilities can be very helpful when your loved one has been diagnosed with dementia. Some families may think it is taboo to discuss concerns revolving around dementia, but it is important for family members to be clear that the family discussion is about honouring your loved one’s preferences and wishes.
Different family members will cope with the diagnosis differently and communicate their thoughts and emotions in their own ways. Sometimes, this might lead to unintentional friction within the family. Some disagreements that may arise from caregiving may be about:
- The type of care given
- Financial responsibilities
- Role of each family member in sharing caregiving responsibilities
- Struggles with managing work, personal responsibilities and caring for loved one
- Emotions that come with the caregiving journey
- Underlying family or relational concerns
It is important that these issues are identified and managed efficiently. Preparing for them can reduce the stresses and strains from caregiving, and in the process, enhance and strengthen family relationships and dynamics.
Set some ground rules to help you and your family members have fruitful discussions on caregiving concerns:
- Keep your loved one’s needs and wants at the centre of the discussion. To have a clearer picture of what their preferences and wishes are, you can consider doing Advance Care Planning (ACP) as early as possible. Read more about ACP.
- Set aside time for regular meetings and discussions regarding your loved one’s care and the various caregiving responsibilities. Care needs can and will change with time.
- Have a roundtable discussion so that everyone will have a turn to speak and raise their concerns.
- Respect each other’s views and needs. Try to see things from all perspectives. Everyone has personal responsibilities that they need to consider – e.g. children, work, spouse, finances, etc.
- Focus on one issue at a time before moving onto the next.
- Consider which method you can use to come to a family consensus – e.g. through majority voting, seeking doctor’s opinion, etc.
- Be open to discuss and possibly adapt your point of view to the priorities at hand.
Who Should Attend the Meeting?
If you have a big family, there may be instances in which certain members will be unable to attend. In such a case, it is important that family members who are in a position to finalise key decisions are present as much as possible, whether or not certain members are able to attend. This may not necessarily mean the eldest relative or the person paying the bills.
Whether your loved one with dementia should be part of the meeting depends on the following:
- Is your loved one adequately able to think clearly and express his/ her wishes?
- Do you think he/ she would be comfortable to be present at the discussion?
- Can the family have a frank discussion if your loved one is present?
Setting an Agenda
In a meeting that reflects deep feelings and opinions from every individual, putting the situation in perspective helps the family focus on the main issue. This can be done by:
- Explaining the condition so that everyone understands what is happening. If you have been talking to the doctor or healthcare professional all this time, then you may be the best person to explain what you know.
- Laying out the possible healthcare options and costs involved with each choice.
- Making someone in the family the decision-maker on behalf of the person living with dementia.
- If your loved one already has a caregiver, or has a foreign domestic worker providing care, the family must assess if the caregiver has the ability to take care of your loved one’s new and developing needs.
Deciding Who Does What
The best way to choose the decision maker is to ask your loved one to choose a person while he/ she is able to make decisions on their own. If a decision maker has not been appointed, the family will need to nominate a decision maker everyone is comfortable with.
The meeting is also a good time for everyone to figure out the part they can play in sharing caregiving responsibilities. Some of the key roles we suggest include:
Main caregiver
This should be the person who has been living with and taking care of the person living with dementia the most.
Finances
Transport
Family members who own vehicles may help to ferry the person to and back from appointments; if the family does not have a car or prefers not to use one, a family member could be in charge of arranging for transport for the person living with dementia.
Support for main caregiver
When the main caregiver needs a break or extra help, or has to leave the country for a period, some family members may volunteer to step in to provide ongoing care.
Liaison with healthcare professionals
Someone who can communicate and relay important healthcare information, if the main caregiver is unable to.
Should the Family Meeting Be Done In a Healthcare Setting?
Some families may prefer to hold the meeting in a hospital as they prefer to consult healthcare professionals directly when questions arise. Care professionals such as counsellors and medical social workers are also trained to help guide a family towards making decisions that benefit their loved one.
Every family has its own circumstances. You may ask a medical social worker or healthcare professional at your institution of choice to provide more advice on holding the discussion. Outside the healthcare setting, you may also approach a Family Service Centre.
Keep the Family Involved
After the discussion, the family should stay in touch with one another. Social media makes it easy for people to contact one another quickly, and messaging apps like WhatsApp are very useful for families to send timely updates on the loved one’s condition. This can also be a good way for members of the family to show their support for the main caregiver.
Giving the caregiver emotional support can be just as powerful as lending a hand with everyday duties.