Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital.

BACKGROUND: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers' perceptions of their own and their care-recipients' needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge. METHODS: The CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient's life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer's perception of the care recipient's future needs, carer's current needs, and a proposed current and future care plan. The researcher's philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants' reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied. RESULTS: Thirty carer participants were included. Analysis identified three major themes: Carers' perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions. CONCLUSION: The CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer. TRIAL REGISTRATION: Australian Clinical Trials Registration: (ACTRN12619001187134).

Testing the reliability of the Health Literacy Questionnaire with carers of older adults receiving hospital care.

OBJECTIVE: To determine the re-test reliability of the Health Literacy Questionnaire (HLQ) with carers of older adults discharged from hospital or attending the outpatient clinic. METHODS: Carers completed the HLQ twice by telephone and rated the acceptability of completing the tool. Tool completion time was recorded. Correlations were calculated between the test occasions using intraclass correlation coefficients (ICC) and 95% confidence intervals. RESULTS: Fifty-one carers of older patients participated. The HLQ showed good reliability (ICC = 0.75-0.90) for seven of the nine scales and moderate reliability (0.50-0.74) for the other two scales. Median completion time was 16.5 minutes (range 9-50), and acceptability was rated as 9.5/10. CONCLUSION: The HLQ is a reliable tool for use with carers of older adults attending hospital. However, the length of time for completion of the HLQ may limit its feasibility for use by hospital staff and carers, given the high stress and time pressures of acute care.

The Role of Adult Day Services in Supporting the Occupational Participation of People with Dementia and Their Carers: An Integrative Review.

The increasing numbers of people with dementia places considerable stress on health and aged care services and has resulted in the development of community adult day services. Aim: The aim of this integrative review is to determine the extent to which these services support the occupational participation of people with dementia, and how they impact their primary carers. Method: The mixed-methods appraisal tool (MMAT) was used to identify relevant studies in the period 2011⁻2016. Results: Nine databases were searched and yielded 16 articles with a variety of research designs for inclusion in the review. Conclusions: Findings indicate that adult day services use a range of approaches to support attendees and their carers. In spite of these efforts, there appears to be a lack of interest in utilizing these services while a person is in the early stages of dementia. This suggests that policies in aged care, such as aging-in-place, need to consider the pressure and stress they exert on carer’s quality of life. Another consideration is to better promote the benefits of participating in adult day services in the early stages of dementia for both the attendees and their carers, thereby delaying the tendency towards early institutionalization.