Support for Dementia Caregivers: Face to Face Meetings

Dementia caregivers need support from medical experts and other caregivers the same way as the people they look after need treatment. In Part 1 of this feature on support for dementia caregivers, Swapna Kishore of Dementia Care Notes highlights the role face to face meetings can play.

People with dementia face many issues — memory problems, confusion, communication problems, mood and personality changes, and so on. They find it difficult to do their normal daily activities. Their situation gets worse as their brain deteriorates. Family caregivers need to support their loved ones through these years of decline and they often juggle this responsibility with other responsibilities of their own. This can make them feel overwhelmed, stressed and isolated.

When looking for ways to cope, family caregivers usually search for information and medical advice, as well as services, but often don’t realize that connecting with fellow-caregivers will reduce their isolation and strain and provide them with a shared pool of practical tips.

Dr. Sridhar Vaitheswaran (Consultant Psychiatrist and Coordinator, DEMCARES, Chennai) explains the importance of peer interactions with an example: “As a professional I can tell a caregiver to get a GPS tracker for someone who wanders, and it can be helpful information. But I have not used one personally. Families that have faced this situation and have the experience of trying out various things can share more powerful information on what they have tried and what worked.”

Hearing peers describe how dementia is affecting their loved ones also helps with the emotional acceptance of dementia realities. One caregiver, who had been feeling overwhelmed and frustrated, says that when she attended a meeting and heard others talk of similar situations, something started “clicking” in her mind. Before the meeting she had understood dementia only at an intellectual level. Listening to peers brought emotional acceptance about her father’s problems and changed behaviour. After that turning point, she felt less pressured and became a more effective caregiver.

One beneficial way of getting information and peer support is using a ‘support group’, which may be available in the form of face-to-face caregiver meetings or as online forums. Part 1 of this two-part article discusses face-to-face caregiver meetings.

What is a caregiver meeting (support group meeting)? 

Caregiver meetings for dementia caregivers are available in a few cities in India. A typical meeting anywhere in the country starts with an informative talk and Q & A (question and answer) session on a specified topic by a doctor or some other expert, followed by caregivers sharing experiences and suggestions. Or a meeting may just be an “open session” for caregivers to talk and share.

Benefits that caregivers report from attending such meetings include:

• Getting reliable information and answers from experts

• Hearing the experiences of other caregivers and getting tips and suggestions from counsellors and fellow-caregivers

• Feeling less isolated after the meetings

Amrita Patil-Pimpale (Founder, Echoing Healthy Ageing, Mumbai) coordinates a professionally-led monthly meeting for family caregivers at Holy Family Hospital. The focus of these meetings is guidance in treatment, support for caregivers, and peer learning for caregivers so as to improve the quality of life of persons with dementia and their caregivers. She says that caregivers benefit a lot from better understanding of medication. “Based on this, some go back to discuss medication with their own doctors.” Caregivers also realize that they should take care of themselves.

Reduction in their sense of isolation is a very common experience.

Saadiya Hurzuk (Coordinator, ARDSI Hyderabad-Deccan Chapter) says, “At an open session of caregiver sharing, many caregivers kept nodding and saying — I can relate to that.”

Unfortunately, many caregivers are not able to attend such meetings, either because face-to-face meetings don’t happen in their city or because they are not able to make the required arrangements and get the time to go for such meetings.

Sometimes, caregivers also hesitate to go for meetings. One caregiver says, “I don’t get much time outside the home. Why use it to listen to depressing things about dementia?” Never having attended such meetings, they are unaware that meeting fellow caregivers with similar experiences and concerns can be valuable for them. At the very least, doing so will help them realize that they are not alone

Tips for selecting and attending caregiver meetings

• Regular dementia caregiver meetings are available in only a few cities in India. Contact your local dementia organizations or major hospitals/memory clinics to check if they hold such meetings. You can also check the city-wise pages on Dementia Care Notes. If your city has caregiver meetings, please consider going for at least some of them. Here are some suggestions for attending such meetings:
• Get informed in time: Ask the coordinator to inform you in advance about any scheduled meeting.
• Talk to the coordinator if you have problems arranging for care for your loved one for the duration of the meeting. The coordinator may suggest some options.
• Archana Sharma (Founder and MD, Samvedna Senior Care, Gurgaon) who organizes caregiver meetings, says, “If this is a problem, they can bring along the person with dementia if they are in a condition to do so. Our staff can keep them occupied with some activities when the meeting is going on.”
• You can also ask whether you can call in using Skype. This is not common yet, but asking never hurts.
• Check if the announced event will be useful for you. Support group meetings are free, but you spend time and money to attend, so select a meeting that is likely to help.
• Contact the coordinator if you don’t know what to expect. Also, see if the topic is of interest. Coordinators rotate topics based on caregiver feedback and what they consider helpful, and you may decide to attend a later meeting when the topic is more useful to you.
• Participate to the extent comfortable. If you are comfortable sharing your situation, you may get emotional relief by participating, and also get suggestions. However, you may prefer to just listen. Don’t get stressed out about participating.

Caregivers can also arrange their own face-to-face meetings.

Caregivers sometimes try to arrange their own meetups, either for exchanging caregiving experiences or for social outings. Such meetings have some limitations. For example, they usually won’t have presentations and answers from experts. The meeting may not have a moderator to provide balance and perspective. There is a danger of sharing wrong medical advice too. Please note that it is best to avoid discussing medicinal approaches and miracle cures in such meetings. Even if some caregivers share personal experiences with medicines, others should not make changes based on them. Instead, they should talk to their respective doctors. Practical problems in self-arranged caregiver meetings are mainly around coordination, such as finding a date, time, and venue that suits everyone. Also, caregivers still need to make arrangements to attend the meeting. In practice, such informal caregiver meetups rarely continue beyond one or two meetings.

Attending caregiver meetings is a very good way of getting support but given that very few cities have such meetings and that caregivers may not be able to make arrangements to attend them, they can look at available online forums for support. Part 2 of this feature talks about that. Click here to read.

Acknowledgements: Special thanks to the caregivers, volunteers, professionals, and group coordinators who generously shared observations and ideas about face-to-face and online support forums.

For more articles related to Dementia and Alzheimer’s Disease, click here.

© 2018 Swapna Kishore