Caregivers' Meeting on Advanced Dementia Care

Topic: Advanced Dementia Care

Facilitator: Dr.PriyaKumari (Volunteer, Pain Relief and Palliative Care Society –M.N.J.I.O.R.C.C. and, Associate Professor- Department of Zoology at Nizams College, Hyderabad)

Date: 17th August, 2013

Place: ARDSI Activity Centre, Plot No-451, Road No-86, Jubilee Hills, Hyderabad

Time: 1pm-2.30pm

  • The meeting commenced at 1pm and was attended by 25 people constituting caregivers, patients and volunteers.
  • Dr.PriyaKumari began the talk with an introduction to dementia and other incurable diseases and their prevalence in our population.
  • She spoke about the suffering that dementia patients and their caregivers underwent- societal stigma, financial burden, uncertainty about the future, isolation and abandonment, and the loss of hope.
  • In her talk, Dr.PriyaKumari covered various topics such as the symptoms of advanced dementia, the need for empathy with dementia patients, the different day-to-day problems faced by advanced dementia patients.
  • Further she spoke of palliative care and defined it as the treatment of hope and other symptoms and the provision of psychosocial and spiritual support to patient and caregiver.
  • To explain the profile of an advanced dementia patient, Dr.PriyaKumari gave the example of an 81 year old person who showed confusion (83%), pain (64%), low mood (61%), constipation (59%) and loss of appetite (57%).
  • The facilitator further delved deeper into some specific problems like constipation, the different causes of constipation in advanced dementia patients and nursing measures for the issue.
  • Mr. Krishnamurthy, a caregiver asked about how one could recognise signs of constipation in a patient and Dr.PriyaKumari explained how the patient's bowel movement patterns needed to be monitored and their stools needed to be checked to find out if there was anything away from normal.
  • Dr.PriyaKumari further spoke of managing pain in advanced dementia patients which was a big problem since they may not be able to give an accurate self-report of their suffering. She spoke of assessing pain through the patient's overt symptoms such as facial grimacing, moaning, groaning and rubbing a body part.
  • A caregiver Mr.Prasad spoke about how he felt his mother, an advanced FTD patient seemed to show overt pain to seek attention. He compared her to a child using various manipulative techniques to seek the parents' attention. Dr.PriyaKumari stressed that the patient needed to be given the benefit of the doubt since, she stated, there was no way of knowing for certain if she was pretending to be in pain or was actually in pain. She advised Mr.Prasad to try giving his mother an analgesic once to see if it reduced her complaining in any way.
  • The facilitator then continued onto the topic of bedsores and their causes and their possible occurrence on the body. She also spoke of incontinence in advanced dementia patients, the importance of maintaining proper breathing, maintaining vital signs, prevention from injury and accidents and the psychosocial aspects of advanced dementia care.
  • The meeting concluded with Dr.Priya Kumari's brief explanation of the services offered by the Pain Relief and Palliative Care Society.