Occupational Therapy Co-Designing Post-Diagnostic Support for People Living with Dementia.

Journeying through Dementia 2020-2023 Part 1

The developing evidence on the benefits of AHP early interventions, the value of supported self-management and rehabilitation in enabling people to live well with dementia is overwhelming. It is therefore imperative that AHPs develop and/or adopt

models of practice based on the evidence. This evidence increasingly emphasises greater use of self-management approaches, highlights the contribution of technology and recognizes the strength of interventions that have been co-created and in partnership with individuals living with the condition.

This first blog shares the development of an occupational therapist specialist intervention engaging with NHS boards in Scotland to implement and integrate post-diagnostic occupational therapy Journeying through Dementia (Mountain and Craig 2012, Craig et al 2023) and the second blog will be posted next week after the national launch event on the 23^rd November 2023 where we are celebrating the work with key stakeholders, partners and friends.

Journeying through Dementia is an occupation-based intervention that enables people at an earlier point in their dementia journey to engage in meaningful activities, maintain community connectedness and supports independence and wellbeing following a diagnosis. It combines self-management and group-based peer support to improve quality of life. The intervention is a high quality, evidence-based intervention that provides rehabilitation and self-management strategies for people living with dementia, supporting them to live as independently as possible, reducing the demand on health and social care services. To be most beneficial people living with dementia should have access to this intervention early in their journey, and therefore ongoing communication and multi-disciplinary working with all key stakeholders is imperative.

This blog provides a summary of phase two of a national occupational therapy improvement project to design occupational therapy post-diagnostic support for people living with dementia in two Health and Social Care Partnerships in Scotland, involving 35 people with lived experience and 5 occupational therapy group facilitators.

This work has demonstrated that is has been possible to integrate Journeying through Dementia into a local post diagnostic pathway with positive impact for people living with dementia and their families. This group-based programme facilitated by occupational therapists, enabled people to access peer support, engage in meaningful activities and remain connected to their local community. It demonstrated the unique contribution of occupational therapy in post diagnostic support to enable people with dementia to achieve outcomes important to them.

To support the implementation, innovations were developed in partnership with people living with dementia, service leads and occupational therapists and included:

1. An interactive website www.connectingpeopleconnectingsupport.online with 32 practical resources to support the content of Journeying through Dementia
2. A series of five postal packs to aid conversation during occupational therapy facilitated group sessions created for people with dementia and their supporters
3. A web-platform www.jtd.org.uk and group facilitators handbook developed to help you as facilitators in preparing and delivering Journeying Through Dementia

This extended service model was found to provide people living with dementia with the support they required leading to improvements in quality of life and enabling participants to achieve their individual goals. Occupational therapists have the specialist knowledge and skills to understand the crucial relationship that happens between the individual, their environment and their chosen occupations which has ensured the success of this national improvement project.

Keys to the success of this intervention are outlined below:

Person living with dementia

• Personalised and individualised approach by developing menu led topics for conversation
• Groups for peer support to learn and practice new strategies with follow up 1:1 follow up sessions
• Importance of the environment the group takes place, in an accessible community and local venues

Occupational Therapy Facilitators

• Built in time for reflection and peer support in their role as group facilitators
• Connect with the persons supporters, as appropriate and at the request of person with dementia
• Developed positive therapeutic relationships in the groups and full use of their therapist skills.

Occupational Therapy contribution to post-diagnostic support

• Build measurement tools into the group process that measure personal outcomes, occupation outcomes and quality of life and share the impact locally and nationally.
• Integrate the tiered approach to occupational therapy access in the three levels
• National and local leadership to implement the change in service provision, aligning to the post diagnostic pathway, communicating with all key stakeholders

It is recommended the delivery of Journeying through Dementia remains a core role for Occupational Therapy in Scotland to support the delivery of Scotland’s Dementia Strategy (2023) Connecting People, Connecting Support (Alzheimer Scotland 2020) and the vision that rehabilitation empowers people to manage their health conditions (WHO 2023).

In part 2 of this blog next week, we will share the launch event and the next steps of our Occupational Therapy Co-Designing Post-Diagnostic Support for People Living with Dementia. Journeying through Dementia 2023/2024.

You can find out more about this work by clicking here. follow us on social media at @ScotjtDementia or email us at AHPDementia@alzscot.org

References

Alzheimer Scotland. 2020. Connecting people, connecting support in action: An impact report on transforming the allied health professions’ contribution to supporting people living with dementia in Scotland. Edinburgh: Alzheimer Scotland.

Craig, C. Fisher, H. Gray, A. and Hunter, E. 2023 Journeying though Dementia. An Occupation-Based Group Approach for Individuals Following Diagnosis in Occupational Therapy and Dementia. Promoting Inclusion, Rights and Opportunities for People Living with Dementia. Jessica Kinglsey Publishers. London

Mountain, G and Craig, C 2012 What should be in a self-management programme for people with early dementia? Aging and Mental Health 16, 5 576-583

Scottish Government 2023 Dementia in Scotland: Everyone’s Story Edinburgh https://www.gov.scot/publications/new-dementia-strategy-scotland-everyones-story/documents/

World Health Organisation 2023 Package of interventions for rehabilitation https://www.who.int/publications/i/item/9789240067097