Quality of life and occupation for people with dementia: the perception of caregivers

[摘要] English: Advanced dementia is a very complex condition and requires that caregiversbe equipped to administer care successfully. Therefore, quality of life (QoL)for persons with dementia in long-term care facilities relies heavily on theknowledge, skills and attitudes of caregivers who spend the majority oftime with these residents. Although various professional bodies all over theworld encourage person-centred care, (i.e. promoting the focus on the residentwith dementia as a unique individual), most residential care facilities in theSouth African context still measure QoL as a list of completed tasks at theend of the day. Therefore, the caregivers' understanding and application of aperson- centred care approach needed careful consideration. Due to the factthat consultant occupational therapists who designed individualised personcentredcare programs for residents with dementia depends on the caregiversto implement these programs, a study was undertaken to describe andexplore caregivers' perceptions of QoL, person-centred care and occupationalengagement for residents with dementia.A triangulation, mixed methods design was applied with a comprehensivesample of full-time caregivers employed at a residential care home (RCH) inBloemfontein. The researcher specifically chose this approach with interviewschedules (qualitative findings) and structured questionnaires (quantitativeresults). Qualitative findings were compared and contrasted with quantitativeresults in order to verify similarities and to identify discrepancies betweenthe two data sets. Literature was also consulted to support similarities anddiscrepancies. The mixed methods triangulation design, therefore,contributed to the trustworthiness of the study.Results and findings indicated that personal and organisational factors hada major impact on the perspectives of the caregivers. The caregivers weremostly conditioned to operate within an approach associated with meetingthe physiological needs of the residents and addressed individualised care asa list of separate chores associated with each resident. One of the reasonssupporting a more physiological approach is the organisational culture found in units where care is provided for persons with dementia. It was also evidentthat if person-centred care could be experienced by caregivers as receivers(employees of an organisation), it might enable them to embrace thepersonal perspectives and needs of each resident individually.Personal factors that impacted the perspectives of the caregivers were theirhome circumstances, the general public opinion and the relationship betweenthem and the family of residents. It appeared that stress factorsassociated with their home circumstances further aggravated the burden ofcare at work, negatively impacting person-centred care. The general publicopinion was led by ageism, which emphasised the low status of their job ascaregivers. Lastly, the relationship between the caregivers and family of theresidents was guided by misunderstandings, unrealistic expectations and roleconfusion between these two stakeholders. The caregivers were guided bythe priorities of the family which were, similar to those of the organisation,focused on physiological care associated with the traditional model, ratherthan person-centred care.The value of the study is that it indicated that a culture change towardscare would be beneficial to the organisation at every level. A move awayfrom the traditional medical-focused care approach could provide newopportunities for growth and development. This implies that the personhoodand dignity of every employee and resident could be promoted, leading to alife worth living.

[发布机构] University of the Free State