A qualitative study of the experiences of long-term care for residents with dementia, their relatives and staff

Abstract

Most older people living in 24-hour care settings have dementia. We employed qualitative interviews to explore positive and negative aspects of the experience of family carers, staff and people with dementia living in 10 homes in London and West Essex, selected to cover the full range of 24-hour long-term care settings. The interview used open semi-structured questions. We interviewed 21 residents, 17 relatives and 30 staff and five main themes were identified: Privacy and choice; relationships (abuse and vulnerability); activities; physical environment; and expectations of a care environment by carers, should they one day live in long-term care themselves. Despite being no longer responsible for the day-to-day care of the residents there was a continuing level of psychological distress among some relatives. We found that residents with a range of severity of dementia were able to participate. The most striking theme from their interviews was the need for choice. All groups talked about improving lines of communication amongst residents, relatives and staff and about the importance of activities. We recommend that homes should set up formal structures for engaging with user and carer views at all levels. This would mean relatives on the board, and regular meetings for residents, relatives, advocates and staff. This should lead to cultural changes where residents are perceived as individuals and care is provided in a more flexible way. There should be a programme of activities in each 24-hour care setting, which all care staff are given time to implement. These activities need to be tailored to the individual resident rather than the whole group.

Caregivers’ burden experienced by relatives living with a person suffering from schizophrenia

“…There are highly significant statistical eISSN: 2357eISSN: -1330 Selection and peer-review under responsibility of the Organizing Committee of the conference differences (p=0,000) to X 2 =15,296 which suggests that the subjects who have experienced intense burden are more likely to manifest a depressive symptomatology. These results are in agreement with those found by Train et al (2005) and Dias (2011). In their opinion there is a strong relationship between high levels of burden and depressive symptomatology in caregivers who deal with mentally ill patients.…”

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

“…van Baalen et al Gwyther, 1997;Heiser, 2002), and only two studies that reported the severity of the illness indicated that it was determined by the score on the Mini-Mental State Examination (MMSE) (Train, Nurock, Manela, Kitchen, & Livingston, 2005;Whitlach, Friss Feinberg, & Tucke, 2005). The type of dementia was only mentioned in two studies (Gwyther, 1997;Keady & Gilliard, 1999).…”

Wellbeing-enhancing occupation and organizational and environmental contributors in long-term dementia care facilities: an explorative study

“…Research has shown, however, that residents with dementia still consider occupation to be important for their quality of life (Train et al, 2005;Dröes et al, 2006). Moreover, several studies show that occupation can have beneficial effects on the wellbeing of long-term care residents with dementia.…”

“…The most commonly used explanations for limited activity programs are limited resources in terms of staff and finances. Both care workers and family caregivers often express the need for additional staff to engage residents in meaningful occupation (Train et al, 2005;Harmer and Orrell, 2008). Innes and Surr (2001) structurally observed active and inactive behavior of 76 residents with dementia over 269 hours, and found no relationship between staff ratio and the engagement of residents in occupational activity.…”

“…Identification also enables studying the impact of the care environment on resident occupation. For example, factors that were found to positively influence residents' occupation are the delivery of small, person-centered activities, instead of a central activity program (Train et al, 2005;Vollicer et al, 2006), a smaller number of residents in a care unit (Cohen-Mansfield et al, 2010b), a homelike atmosphere of the common living room (Phinney et al, 2007;Smit et al, 2012), and visual and occupational stimuli (Elliot, 2011).…”