"It reminds me that I'm still me": Social programs for younger persons with dementia
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Introduction: The needs of persons living with young onset dementia (YOD) may not be met by community programs for older persons with dementia. Two YOD programs in southern Ontario were designed to meet the unique needs of this group. This study aimed to understand: program processes, potential benefits, member goals, and ways in which the program could be improved to better serve the needs of persons living with YOD and their care partners. Methods: The study followed a qualitative action research approach, and explored the potential of Goal Attainment Scaling (GAS) as an individualized outcome measure for individuals in YOD day programs. Semi-structured individual interviews were conducted with 12 program members, 11 care partners, and seven program staff. Focus group interviews were conducted with members (six/site), and staff (seven and five/site). Interviews were tape-recorded, transcribed and analyzed using directed and emergent coding. Goal Attainment Scaling (GAS) is an individualized measurement tool that has been tested for use with persons with dementia, but has not yet been examined in this context. This study aimed to understand whether GAS could be useful in identifying member goals, and as an outcome measure in social programs for persons with YOD. Results and Discussion: Results provide an understanding of the barriers, facilitators, and recommendations for program improvement, from the perspective of persons with YOD, their care partners, and staff. Benefits for program members were highlighted including but not exclusive to, connecting with others around common experiences, and active engagement in activities – members see the program as a club. Program staff described the value of peer support in accommodating the changing needs of members over time. Care partners received enhanced respite, feeling reassured that the person with YOD is in good hands and among peers. GAS was helpful in identifying the types of goals that members have in this context. Members described positive progress on individual goals (GAS), including socializing and getting out in the community; most members showed a one- to four-point increase on the five-point scale. This progress was reflected in the collective T-scores calculated. We were unable to identify goals for those members who struggled with verbal communication skills. Conclusions: Two YOD day programs, operating as social clubs, provided benefits for younger persons with dementia and their care partners. This study indicated components of YOD day programs that are valued by members and care partners, and that should be integrated into the development of a program model and service requirements for these programs. GAS shows promise as an individualized outcome measure in social programs for younger persons with dementia. Alternatives to a discussion based format should be explored for those who struggle with verbal communication. Further investigation of the use of GAS in this context is warranted in larger studies. Knowledge translation and significance: The results of the study may be useful in refining the processes of the existing YOD day programs. Additionally, the results may aid in the development of service requirements and standards for these programs, which may then facilitate the expansion of these services. Highlighting the differences in need for persons with YOD and care partners is anticipated to have policy implications, such as recognition by regulatory bodies of the benefits of separating YOD and LOD services, and the provision of funding to improve the availability and accessibility of such services.