This disease is isolating. Friends recede, family members back away. – Support group member.
I belong to a number of on-line dementia support groups. Recently I posted a comment about research that shows that connection to community is the most important factor influencing our health – even more than a healthy diet, exercise or not smoking.
I wasn’t prepared for the reaction! My post was the proverbial last straw for a number of exhausted caregivers. Whether caring for a partner 24/7, or juggling responsibilities for children, work and frail parents, many people commented that they just couldn’t find the energy, respite, or hours in the day to keep connected to friends and to their communities.
To illustrate this challenge, one support group member described an average day: Work 8-5, Monday to Friday. Come home, make dinner, clean, clean her and get her to bed, laundry, clean, log in to support group, bed at 11 and start all over. No calls from friends, no drop-by’s, can’t meet up after work. Stay social? Yeah, right!
Here are some reasons why caregivers said they had become isolated:
- There’s a big stigma around dementia; friends don’t want to visit because they don’t know how to relate to my loved one any more.
- My partner with dementia has become very jealous. He doesn’t want visitors and he doesn’t even like me talking on the phone.
- It’s time-consuming and stressful to organise social engagements. Some friends are also caring full-time for their parents and don’t have time; others don’t understand that if an emergency happens I’ll have to cancel at short notice.
- Some family members keep their distance and are unwilling to get involved; they have no idea how demanding it is to be a full-time caregiver, but they criticise me from afar. This is both unhelpful and deeply offensive.
- Some of us don’t like delegating or asking for help, so we end up training others not to offer their assistance.
One person observed: This isolation is a twofold problem. First, you need the socialization daily to stay healthy, but second, when your loved one passes, if you have not nurtured your network of friendships, you may find it has evaporated.
How can caregivers keep connected to friends and community?
When full-time caregivers are unable to take a break, their physical and emotional health can suffer. We need to stop trying to do it all and get help.
Here are some suggestions from the online groups:
- Look for resources in your area that will help you manage some tasks so that you can take a break.
- Join an online and/or face-to-face support group and share ideas and encouragement with others who are also caring for a loved one with dementia.
- Find out if there are day care centres or social groups in your area that accommodate people with dementia and their care partners. Socialise with people who understand.
- Caregiving is a team effort, so get good at delegating. Sit down with your family and close friends and figure out how each person can contribute to caring, visiting, housekeeping and financial or administrative tasks. Choose something you enjoy doing.
- Draw up a roster of regular visits from friends and family members who live nearby. Those who live further away can pay a professional carer to relieve the person who provides daily care. They can also spend a holiday with their loved one and allow the regular carer to take a longer break.
If you are the friend of a caregiver, learn how to communicate with their loved one who has dementia. Then offer to spend a couple of hours a week with the person – and mean it! Enable your friend to get out and have some fun, or visit them together for tea, and pick up clues for helpful jobs or treats you could offer.
Community connections are vital for our health. Let’s strive to reduce the stigma associated with dementia and to create Dementia Friendly Communities where both people with dementia and their caregivers are welcomed.