06/02/2026
The new year started with initiating new ideas. It was our long time wish to start offline support group meetings. The push came when one of our caregiver’s expressed that we meet in person so that the exchange of thoughts is more meaningful.
We conducted our meeting at Jeshtha Nagarik Virangula Kendra on Paud Road. Dr Rohinitai Patwardhan was kind enough to give us that space. Around 30 caregivers attended the meeting. It was good to see that they could see the face behind all the messages that they send each other. Of course, as it was Sankranti, many exchanged tilgul to celebrate the occasion.
A lot of important issues came up – some related and some unrelated. The following summarizes important points.
• Should the spouses of the caregivers’ be involved in the care of the parent was the first issue. We discussed pros and cons of the scenarios where either single caregiver handles major responsibility and where the responsibility is shared jointly. Many believed shared responsibility is always better. It always better that everyone in the family is involved so that they are aware of what is happening to the patient. So, if one person is not available then the other person can easily fill in. Burnout is also high if only one person is involved. There are a lot of trigger points. So, if everyone is in the loop then the understanding is better. There is objectivity too.
• Importance of sharing with caregiver group was discussed next. It was felt that group always is a stressbuster as the emotions are similar so understanding is better. There is no judgement and empathy towards each other. Sharing between each other is always helpful.
• Taking efforts to maintain mobility of the patient was highlighted. It helps to cognition to remain stable. They remain independent for long and it maintains their physical health and stamina
• One caregiver raised the topic of - caregiver skills. Many felt that caregivers should remain patient and handle the patients carefully. There is a need for caregivers to have training so that they can manage difficult behaviors at home.
• How to handle burnout was another topic discussed. Many caregivers wondered What could be done, when there was a need to talk to someone but only two people were in the house and one of them is the patient. When, the cause of distress is the patient, the patient is not in a condition to help the caregiver in that situation it was suggested that doing somethings for themselves was important. Taking time out, talking to some friend or family member who is compassionate and can hear the caregiver out instead of giving advice were some ways to follow. Having some hobbies is also a good stress buster and it will take the mind away for some time. One needs to distract themselves. Continuing social life is important. Binge watching can also help at times.
• Peer counseling is also a very effective tool. If caretakers talk to each other then the suggestions are more realistic and effective. Also talking to professionals help is essential, it will help to relieve the stress.
• Spirituality does not help much when you are in a compromised mental state. Meditation, yoga does have a role to maintaining calm but true spirituality is in taking care of your loved one, many felt.
• Nonverbal cues can often get misinterpreted. Caregivers can use good positive strokes and touch to express that they care for the patient, appreciate what they are doing. This gives them a good feeling and it stays with the patient for long.
• Financial management is important. Also, WILL has to be done when the patient is in the mild stage. Later, the patient may lose his ability to sign or undertake any financial transactions. A neurologist can give a medical certificate that can be used in banks or where other financial issues are involved. Also, a power of attorney is a must. There can be other illness along with dementia which may need hospitalization. Also if there is insurance, then it helps when there is hospitalization
• Falls must be prevented. The house should be made fall proof. Putting anti -skid door mat, grabs, adequate lighting, firm chairs with hands, removing excess furniture from the room etc. are some of the ways to reduce possibility of falls. if there is a fall then the patient is likely to be bed ridden and the risk of bed sores increases. It is very painful for the patient but very difficult to manage for the caregivers.
• Maintaining nutrition of the patient is also important. Sometimes they do not like certain food and that can hamper their nutrition. So, tricking them or altering the form of food can be useful. Also, if the patient has short term memory issue, then the patient may forget that he has eaten and ask for food repeatedly. So, reducing the quantity of food at one time, giving him alternative bite size food we useful.
Overall the discussion was very lively and caregivers realized that adding humour and looking at interactions with the patients positively and objectively will make life easier for them.
