Caregiver Enablement Training to Support Homecare: A Study from India

Abstract

AbstractHomecare is the prevalent model of dementia care in India and ‘attendants,’ who are non‐trained lay workers are often employed in Indian households to assist with personal care, ADL and other support which the family may need. Providing training to these attendants can support continued dementia care at home. We present initial data from a caregiver enablement program (CEP) being provided in India.MethodsThe (CEP) consists of a minimum of 6‐8 individually tailored sessions beginning with a clinical evaluation. Using a collaborative approach, challenging areas of caregiving are identified and prioritized. Across the sessions, information about what may be contributing to these challenges and tips for providing care are provided by a dementia trained specialist. Attendants and family members are encouraged to use these approaches and feedback was discussed in an iterative manner to improve the caregiving process and address emerging issues.ResultsTen families availed the caregiver enablement program, out of those 2 patients were living with their 24 hours attendant and 8 patients were living with family and attendants. The caregiver enablement program was conducted online, offline and in hybrid mode, 5 of them were online sessions, 4 offline sessions and one hybrid session (session conducted at home and online). Patients had moderate to severe stage dementia (Hindi MMSE Mn = 13.3, SD = 5.7; Caregiver burden: Zarit burden interview Mn = 29.8 SD = 19.6).Key areas where enablement was required were basic understanding of dementia, acceptance of the illness by the family and that they need external support, how to manage challenging behaviours like toileting, bathing, dressing, incontinence, transferring and feeding, how to engage the patient in meaningful activities and the need for environment modifications to improve safety and managing challenging behaviours. Psycho educational skill building, multi component intervention was found to be effective in the present study to combat the concerns shared by the attendants/family members.ConclusionThis study demonstrates how up‐skilling lay workers through training on dementia and management of challenging behaviours can support home care. Supporting the informal care system with specialised training can be an effective way of providing dementia care in low resource settings.