Facing Dementia and Learning Together

1. Facing Dementia and Learning Together Tracy Gilmour Post Diagnostic Support Manager Alzheimer Scotland Rosie Leavett Seize the Day Project Manager Alzheimer Scotland Facing Dementia & Learning Together

2. Session Outline Facing Dementia & Learning Together Introductions 4 Key questions Group Discussion 1: The Mitchell Family Feedback 1 Group Discussion 2: Supporting the Mitchell Family Feedback 2 What works! Questions

3. 4 Key questions •What information do you need at the time of diagnosis? When do you want to receive it? Where do you want to receive it and from whom? How do you want to receive it – ie in what format?

4. Group Discussion 1The Mitchell Family Facing Dementia & Learning Together What are the 3 key issues for Bob - Group 1 Irene – Group 2 Lorraine – Group 3

5. Group Discussion 2Supporting The Mitchell Family Facing Dementia & Learning Together You are now wearing your professional hat again! Given the key issues for each of the Mitchell family, how would you support this family?

6. 5 Pillars of Post-diagnostic Support Facing Dementia & Learning Together Understanding the illness and managing symptoms Supporting community connections Peer support Planning for future care Planning for future decision-making

7. StD/FDT – 6 session programme Facing Dementia & Learning Together • Background (Gaun Yerself) • Sessions once a week over six consecutive weeks (2hrs) • Made up fo two parts – education and peer support (separate groups) • Invite families to participate • Invited Speakers

8. FDT – topics covered Facing Dementia & Learning Together • Week 1 Introductions • Week 2 What is Dementia? • Week 3 Living Positively with Dementia (SDWG) • Week 4 Coping with Symptoms (OT/Psychologist) • Week 5 Traditional supports and how to access them (SW/Telecare) • Week 6 Planning for the Future & Self Directed Support

9. What we have learnt…. Facing Dementia & Learning Together • Informal opportunities to meet before formal sessions • Enhanced benefits of groups which include both people with diagnosis and family members • People with diagnosis who come alone need follow up sessions to reinforce learning • Timing of information – not always immediately after diagnosis • Transport

10. Research and Strategies Facing Dementia & Learning Together • Gaun Yersel! The Self Management Strategy for Long Term Conditions in Scotland – Long-Term Conditions Alliance Scotland, 2008 • www.ltcas.org.uk • Expert Patients Programme, 2006 – Dept of Health • www.dh.gov.uk/en/AboutUs/MinistersAndDepartmentLeaders/ChiefMedicalOfficer • Creating Dementia-Friendly Communities, 2002, Alzheimer Scotland

11. Research and Strategies Facing Dementia & Learning Together Useful Services for families: research findings and directions. Zarit, Gaugler and Jarrett (1999) Int J Geriatr Psychiatry. 14 165 181 Managing Sense of self: coping in the early stages of Alzheimer’s disease: Pearce et al, (2002) Dementia 1 (2) 173 - 1921 Perceptions of change over time in early-stage Alzheimer’s disease: Implications for understanding awareness and coping style: Clare et al, (2005), Dementia 4, (4): 487-520 The Talking about Memory Coffee Group: A new model of support for people with early stage dementia and their families. (2005) Dementia, 4 (1) 139 – 143 Processes and experiences of mutual support in professionally-led support groups for people with early stage dementia. (2005) Dementia, 4 (1) 87 – 112 Developing awareness about awareness in early stage dementia: The role of psychosocial factors. Clare (2002) Dementia, 1(3), 295–312.

12. Thank you for taking part! Facing Dementia & Learning Together Tracy Gilmour Post-Diagnostic Practice Manager Facing Dementia Together Eastwood Centre 38 Seres Road Giffnock G76 7QF Tel: 0141 304 7601 Email: tgilmour@alzscot.org Rosie Leavett Seize the Day Project Manager Alzheimer Scotland 492 Union Street Aberdeen AB10 1TS Tel: 01224 632137 Email: rleavett@alzscot.org