The impact of prolonged disorders of consciousness on the occupational life of family members

The impact of vegetative state (VS) and minimally conscious states (MCSs) on an individual is devastating. VS and MCSs may be transitional towards recovery, but may become permanent. Although devastating for the individual the nature of these conditions also has a profound effect on the family. This study examined the impact on the family member and the changes in the individuals’ occupation. Six participants (spouses, partners or parents) were recruited to the study. Mixed methods were adopted to meet the requirements of the research and participants. Data were collected at 6 and 12 months post-injury, using time diaries, a questionnaire and semi-structured interviews. At 6 months post-injury the greatest amount of carers’ time was allocated to occupations involving the person in a Disorder of Consciousness and less time to social and leisure activities. Participants had difficulty viewing the future, lacked the desire or capacity to engage in previously enjoyed activities. At 12 months those impacts were still evident although changing. The transition to balanced occupational activity is slow, requiring a number of catalysts to change. A conceptual framework for a return to balance is provided, and guidance on advice from family members to families in a similar situation is given

Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia

Objective: An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care; and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers’ experiences of engaging their relatives in daily activities in domestic settings. Method: Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Results: Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative’s daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative’s identity; enhancing a sense of connection with their relative’s role and identity, using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. Conclusion: This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed