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: [email protected]
Rosie LeavettSeize the Day Project Manager
Alzheimer Scotland492 Union Street
AberdeenAB10 1TS
Tel: 01224 632137 Email: [email protected]
Facing Dementia & Learning Together
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