Guidance and tips
Recommendations for caregivers of a person with dementia
Tools for the extended family: harnessing and receiving real help
- Ari Manor
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What does everyday flexibility look like?
Family members, friends, and neighbors often want to help when a loved one is dealing with dementia, but they don’t always know what to do. A general request like “let me know if you need anything” leaves the responsibility with the already busy family member. On the other hand, small, clear, and coordinated help can turn a good intention into a real circle of support.
The goal is not to divide care equally among everyone, but to find an appropriate way for each person to contribute – without violating privacy, without burdening, and without taking away the sense of control from the person with dementia and the primary caregiver.
Eight ways to make help practical
- When the family denies: Denial can be a way to deal with fear and pain. There’s no need to win an argument or convince everyone at once. You can start by listening empathetically to concerns, then ask for help with one small, obvious task – a ride, a shopping trip, a phone call, or a quick visit.
- Short and focused update: An effective family update includes just three things: what has changed, what is needed now, and who can take responsibility. When you define an action rather than just describing a difficulty, it’s easier for family members to understand where they can fit in.
- A short visit is still a meaningful visit: Not every session needs to be long. Even twenty quiet minutes can provide connection for the person with dementia and a break for the primary caregiver. It is best to choose a time when the person is more alert, a familiar place, and a pace that suits their situation that day.
- Integrate the grandchildren sensitively: Children and teenagers can be part of the circle of contact, but not become caregivers. Explain to them simply and in an age-appropriate manner, offer them a short, familiar activity – pictures, music, a simple game – and leave the responsibility for care and decision-making to adults.
- You also see the caregiver's spouse: Sometimes the most important help isn't directed directly at the person with dementia. Ask what would really make the week easier: a meal, shopping, transportation, running a small errand, or an hour of presence that allows the primary caregiver to rest, exercise, or run an errand.
- We help neighbors and maintain privacy: A trusted neighbor can be an important part of your safety net, but you don't have to share the whole story. Share only the necessary information and define in advance what you want: to notice if the door is left open, to call in an unusual situation, or to be available at an address at a certain time.
- Invite friends explicitly: Friends may distance themselves not because they don't care, but because they're afraid of doing something wrong. A concrete invitation—on a specific day, for a short time, in a familiar place, with a simple activity—reduces uncertainty and makes it easier for them to stay in touch.
- You don't manage everything alone: The more tasks there are, the better to divide up clear areas of responsibility: appointments, shopping, contact with family members, errands or visits. For each area, you can assign a responsible person and an agreed time for updating, so that the primary caregiver does not have to start over and chase everyone each time.
Good help is not limited to "tell me if you need it." It defines what is done, when, and who is responsible - and allows the family to maintain both the connection, the respect, and the strength over time.
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