Monthly Caregivers' Meeting Sharing of Caregivers' Issues

Topic: Sharing of Caregivers’ Issues
Facilitator: Ms Amulya Rajan (Psychologist, ARDSI Hyd chapter)
                   Mr Koti Babu (Project Manager, ARDSI Hyd Chapter)
Date: 22nd February, 2014
Place: ARDSI Activity Centre, Plot No-451, Road No-86, Jubilee Hills, Hyderabad
Time: 11.30 am - 1.00 pm

  • The meeting commenced at 11.30am and was attended by around 20 people constituting caregivers, volunteers and ARDSI and staff.
  • The caregivers were asked to share their experiences in dealing with patients and describe any specific challenges that they are currently facing in taking care of their relatives with dementia.
  • Mrs. Shobha spoke about her journey in taking care of her late husband. She described how his disease had progressed through the different stages of dementia since the diagnosis and until he breathed his last. She also briefly ennumerated the kinds of challenges that she faced as a caregiver at each stage. Mrs Shobha particularly stressed on how important it is for the caregivers to take care of themselves by making sure they get enough rest and time for themselves, as this would affect how they coped with their situation and tended to the patient.
  • Mr Krishnamurthi then went on to spoke of how his wife had been having a lot of visual hallucination lately and how he should deal with it. The caregivers then discussed their experiences with hallucinations and how each had dealt with it. The facilitator also pitched it by speaking about how one should validate the patient’s experience of hallucinations without denying or ridiculing them for seeing or hearing things. She also advised taking the help of a doctor if the hallucinations were increasing in frequency and intensity and were causing distress to the patient.
  • There was some further discussions on how to deal with issues like sleeplessness, incontinence medicating the patient and trusting doctors' opinions.
  • Mr Ramchandani spoke of the bitter experience he had with doctors and how his wife had been wrongly medicated which had led to the worsening of her condition. The group was in consensus about this and stressed on how important it was to find a doctor who understood dementia.