Why We Need Dementia Caregiver Support Groups & Training

How important are support groups and training programs for primary caregivers and why? This is what an expert had to say.

Mangala Joglekar has been a counsellor and social worker for over 25 years. She initiated the Memory Clinic in Deenanath Mangeshkar Hospital, Pune under the Neurology Department and also runs the well-known Alzheimer’s Support Group, Pune. As part of Alzheimer's Month, we bring you a short Q&A with her on the importance of support groups and caregiver training.

What is the biggest benefit of caregiver support groups and why should caregivers join them? Why do you recommend them to caregivers and what is the biggest benefit?

Answer: There are many benefits. Caregivers gain valuable information about caregiving, maintaining the quality of life of the person with dementia (PwD), and referrals for resources. They also have the opportunity to network with other caregivers, receive emotional support and guidance, and develop problem-solving skills. E.g., our support group provides information about our programs, and caregivers can communicate with each other 24/7 through the WhatsApp support network and monthly meetings. Together, these advantages create a supportive community that addresses various caregiving challenges, offers recommendations for assistance at home, connects caregivers with family doctors who make home visits, when required, provides guidance on nutrition and addresses communication difficulties. Caregivers often experience emotional lows and require support, and our groups become like a second family to them. This is especially important as they may be socially isolated during this journey. It gives them the courage to navigate this difficult path, which can be challenging to walk alone.

Tell us about the Alzheimer’s support group and other dementia initiatives you run.

Answer: I operate the Memory Clinic under the Neurology Department at Deenanath Mangeshkar Hospital in Pune and independently manage the Alzheimer’s Support Group, Pune. To the best of my knowledge, it is the only professionally run support group in Pune.

What makes dementia caregiving so challenging and what distinguishes it from other illnesses?

Answer: Dementia caregiving is distinct due to the nature of the disease itself. Cognitive abilities decline, and patients require increasing levels of support. Unlike other illnesses, dementia caregiving is an extended journey, lasting potentially for decades, with an uncertain duration. It is especially challenging as the patient loses the ability to engage in a give-and-take relationship. Spouses, who often share many responsibilities, are deeply affected.

The caregiving role expands for the caregiver spouse to include managing financial matters and other domestic responsibilities that may have been divided earlier. Behaviour issues are common in dementia and can make caregiving very challenging, leading to stress, emotional strain, and even depression-like symptoms for caregivers. The inability to control the situation compounds these difficulties. These factors set dementia caregiving apart and emphasize the importance of joining a support group.

Is dementia training important for family caregivers and not just professionals?

Answer: Yes, dementia training is crucial for family caregivers. Training provides valuable insights and pointers into Dementia and Alzheimer's that ease the caregiving journey. It ensures caregivers understand what they are dealing with and they are not alone and offers guidance, emotional support, and tips on seeking help.

Caregiver training at ARDSI, Kolkata; Image from their website

Caregivers often neglect their own needs, which can lead to health problems. Training helps caregivers realize the importance of self-care. At our Alzheimer's Support Group, training programs typically last two days but continuous support and information-sharing occur through support group meetings and WhatsApp. Caregivers can always find answers and assistance within these groups.

Note from us: You can access training programs for family caregivers at various ARDSI centres and Dementia care centres across the country. Please see a resource list below but kindly call them to check the latest information and training schedules.

Could you share some caregiving tips for situations like fussing at mealtimes, aggression or other challenging behaviour for caregivers who may be reading this?

Answer: The most important thing for caregivers is to accept the situation. And then to equip themselves with knowledge about the ailment to understand it better. Avoid arguments and lectures when dealing with challenging behaviours. Instead, focus on positive communication. Seeking advice and assistance is essential, as even experienced caregivers benefit from guidance. No one is born a caregiver. Remember, caregiving is a skill that can be learned, and it's okay to seek help and advice from others.

Do you think it makes sense for caregivers to avail of dementia daycare to provide respite and a different environment for the person with dementia if it's accessible and affordable?

Answer: Yes, dementia day care offers essential respite for caregivers and benefits patients by providing a different environment with stimulating activities. Research shows that patient behaviour often improves in such settings. Caregivers learn how to handle their responsibilities better, resulting in more peaceful relationships, important for both the person with dementia and the caregiver.

Have you witnessed positive changes in caregivers after they've received training and guidance from your support group?

Answer: Absolutely, we've seen remarkable transformations in caregivers after training. For instance, a daughter-in-law with a strained relationship with her mother-in-law became a more positive caregiver through counselling and support. She now shares advice on our WhatsApp platform for others. A husband who had bad communication with his wife has become a better communicator after receiving counselling and knowledge that this is a long-term situation and his way of communicating with his wife, who has dementia, can be very challenging for the entire household. These success stories highlight the potential for positive change and improved caregiving relationships. Change does not happen overnight, and is time-consuming. However once caregivers accept that the person with dementia is not going to change and the change has to come within themselves if they are taking on the responsibility, they can deal with things differently.

For support group and caregiving training:

Alzheimer's Support Group, Pune

mangal.joglekar@gmail.com

https://alzsupportpune.org/

Alzheimer’s And Related Disorders Society of India, Calcutta Chapter

Administrative Office

Phone: +91 08232014540/ 9331039839

Email: ardsikolkata@yahoo.co.in

Website: www.ardsikolkata.org

Scarf, Chennai

Phone: 7358588822

https://dementia.scarfindia.org/