Facing Dementia and Learning TogetherTracy Gilmour

Post Diagnostic Support ManagerAlzheimer Scotland

Rosie Leavett Seize the Day Project Manager

Alzheimer Scotland

Facing Dementia & Learning Together

Session Outline

•Introductions•4 Key questions•Group Discussion 1: The Mitchell Family•Feedback 1•Group Discussion 2: Supporting the Mitchell Family•Feedback 2•What works!•Questions

Facing Dementia & Learning Together

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?

Group Discussion 1The Mitchell Family

What are the 3 key issues for •Bob - Group 1

•Irene – Group 2•Lorraine – Group 3

Facing Dementia & Learning Together

Group Discussion 2Supporting The Mitchell Family

•You are now wearing your professional hat again!•Given the key issues for each of the Mitchell family, how would you support this family?

Facing Dementia & Learning Together

5 Pillars of Post-diagnostic Support

1. Understanding the illness and managing symptoms

2. Supporting community connections3. Peer support4. Planning for future care5. Planning for future decision-making

Facing Dementia & Learning Together

StD/FDT – 6 session programme• 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

Facing Dementia & Learning Together

FDT – topics covered • 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

Facing Dementia & Learning Together

What we have learnt….• 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

Facing Dementia & Learning Together

Research and Strategies• 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/Chi

efMedicalOfficer

• Creating Dementia-Friendly Communities, 2002, Alzheimer Scotland

Facing Dementia & Learning Together

Research and Strategies• 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. Facing Dementia & Learning Together

Thank you for taking part!Tracy Gilmour

Post-Diagnostic Practice Manager Facing Dementia Together

Eastwood Centre38 Seres Road

GiffnockG76 7QF

Tel: 0141 304 7601 Email: tgilmour@alzscot.org

Rosie LeavettSeize the Day Project Manager

Alzheimer Scotland492 Union Street

AberdeenAB10 1TS

Tel: 01224 632137 Email: rleavett@alzscot.org

Facing Dementia & Learning Together