Title

Adult day services: experiences of occupational participation by people with early dementia and their carers

Author Identifiers

Janice Du Preez
ORCID: 0000-0002-0541-964X

Date of Award

2019

Degree Type

Thesis

Degree Name

Doctor of Philosophy

School

School of Medical and Health Sciences

First Advisor

Professor Jeannine Millsteed

Second Advisor

Professor Ruth Marquis

Third Advisor

Dr Janet Richmond

Field of Research Code

111701, 111709

Abstract

Background issue:

Reduced opportunities for occupational participation by adults with dementia impact their quality of life and wellbeing. It also affects the health and wellbeing of carers with whom they live. Adult day services were identified as possibly providing opportunities for meaningful activity engagement. However, there is a paucity of research on the occupational participation needs of individuals with early stage dementia who use adult day services and their carers.

Aim and significance:

This study aimed to identify the occupational participation (engagement in everyday activities that are individually meaningful) experiences of people with early stage dementia and their primary carers, whilst in the home, and during adult day service attendance. Furthermore, this study explored how carers ’perceptions on any impact the adult day service attendance had upon the persons with early stage dementia. An important inclusion was the perspectives of people with dementia and recognition of the contribution they can make to research. Lastly, understanding how the occupational participation experiences of these two groups are affected by adult day service utilisation provided insights on how adult day services and related policies can enhance the health and wellbeing of people with early stage dementia and their carers. Understanding how changes in habits, roles and routines affect occupational participation experiences of these two populations in the home, and during adult day service attendance is fundamental to enabling successful ageing-in-place.

Method:

Qualitative research methods were selected as the most suitable and trustworthy approach to investigate the lived experiences and perceptions of vulnerable individuals with early stage dementia and their carers. Issues such as rigour and of transferability were addressed throughout the collection and interpretation of data. A semi-structured interview schedule was developed, drawing on the concepts in the Model of Human Occupation. A pilot study was conducted to pre-test the interview schedule and some adjustments were made. The final schedule was used in interviews conducted jointly with participants with dementia and their carers and individually, face-to-face with the primary carers. Interviews were conducted in a location of their choice, digitally (audio) recorded and transcribed verbatim. Field notes and an audit trail of procedures were maintained throughout.

Recruitment:

A purposive sample of 30 participants, comprising 15 community-dwelling individuals with early stage dementia and their carers (15), were recruited.

Materials:

Semi-structured joint and individual interviews, modelled on the theoretical framework of the Model of Human Occupation, were used with each of the 30 participants

Ethics:

Approval by the Edith Cowan University Human Research Ethics Committee was given. Research did not proceed prior to approval.

Analysis:

Analysis of the narrative data proceeded through an iterative approach that distilled data into themes.

Findings:

Findings from this study revealed that occupational participation that is, engaging in meaningful activities, during adult day service attendance positively impacts attendees by enhancing their sense of mastery, purpose and validation, and relieves their boredom. Attendees’ experiences were further enhanced by newly formed friendships with peers with whom they felt comfortable, understood and therefore safe. Carers perceived the benefits of adult day service attendance for attendees as providing opportunities for socialisation and that the co-operation social and built adult day service environment promoted attendee’s occupational participation. Whilst carers welcomed the respite adult day service attendance brings, they had to weigh the stressors of preparing their attendee for adult day service attendance against the benefits of respite time. An integrated model of service delivery and support for people with dementia, their primary carers and adult day services is proposed.

Conclusion:

Adult day services provide opportunities that encourage occupational participation and this contributes to enhanced wellbeing for people with early stage dementia. Recommendations for future research are given, and inter alia include a closer working nexus between the service recipients, service providers and policy makers. Research outcomes may inform recommendations for future programming in community-based adult day services.

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