Supporting a family member with dementia to live at home: The experiences of caregivers

Abstract

BACKGROUND: In the United Kingdom, specialist teams managing crises in dementia make efforts to reduce inpatient admissions by supporting people to live for longer in their own homes. However, fluctuations in the health and social circumstances of both the person with dementia and/or their family caregiver can lead to 'crisis': a breakdown in home care often leading to inpatient admissions. At this point, a team managing crises in dementia (TMCD) might become involved. These multidisciplinary teams begin with a rapid assessment to establish the needs of the person with dementia and their caregiver(s), followed by intensive but short-term interventions to reduce the risk of inpatient admission. There is little evidence as to how family caregiver experience input from a TMCD. METHODS: A thematic analysis of qualitative interviews with caregivers supporting a family member with dementia to live at home and who have received support from a TMCD. RESULTS: The personal troubles of family caregivers are intertwined with their experience of engaging with and trying to gain support from human services, particularly TMCDs. While respondents describe how specific individuals have addressed or added to the troubles they face, the most impactful interventions from their perspectives are medication for managing challenging behaviour and knowing that there is a service they can telephone in a crisis. CONCLUSIONS: Efforts to reduce inpatient admissions by supporting people to live in their own homes for as long as is practicable, even when carers may have reached the limits of their caring capacities, can, at best, only delay inpatient to long-stay residential accommodation. This is because when one frail older person has the responsibility of caring for another frail older person, even with support from TMCD and other health and social care services, crises are difficult to manage.