Peer support projects | Dementia Partnerships

Objective 5 – development of structured peer support and learning.

Area	Cornwall
Contact	Sue McDermott
Email	[email protected]
Type of site	Peer Support Group
Objectives	The aim of this project is to facilitate the grass roots development of sustainable, community-led Memory Cafes/Peer Support Groups across Cornwall and to form a Network which will support best practice and enable a learning exchange. To help communities develop new Memory Cafés/Peer Support groups across the county, by going into local communities and gathering together interested partners (GPs, CMHT nurses, local groups (e.g. Older Person’s Forums, WI, Rotary Club, Day Services, Carers’ Groups), and ‘growing’ Peer Support groups using a grass roots approach. However, by the time the project was up and running, at least 12 Memory Cafés had developed without the projects’ support, and so much needs to be done now to consolidate what has been a rapid growth. To help Memory Cafes/Peer Support Groups become sustainable, by working with groups to increase and improve governance with advice and practical help on constitutions, structure, charitable status, venues, Health & Safety issues, find/apply for funding, grants etc, and to develop this advice and guidance into an accessible toolkit. To develop of a Memory Café Network across Cornwall, which would open to all peer support groups/Memory cafes, and would facilitate the sharing of information, training and resources. The support and up-skilling of community volunteers is central to sustainability of these groups, and the network will be led as much as possible, by the needs/wishes of Memory cafes, people with dementia and their carers. To explore how ‘Time-bank’ volunteering concept could develop stronger social networks and inter-dependence, through piloting the Time bank involvement with at least one memory Café possibly more.
Run by	Alzheimer’s Society
Numbers / types of staff	Memory Café Network Manager = 28 hours per week Age Concern Support worker = 21 hours per week Volunteer Cornwall Support Worker = 18.5 hours per week We have approx 17 cafés running 24 times a year = 408 café sessions a year Each café has approx 5 volunteers x 3hrs per session x 408 café sessions a year = 6120 volunteer hours per year or about 118 hours per week minimum
Costs	Overview Cost per café to health / social care per year = £800 (24 sessions) Cost per café session to health / social care = £800/24 = £34 Cost to health/ social care per person / event < £3 i.e. £34 / average no of guests (12 minimum) Cost burden to user: £0-10 Capital costs No buildings built or bought but room hire is often paid. IT equipment such as laptops/home email is essential, but most volunteers are using home computers Infrastructure costs Room hire (about 12 cafés pay) x24 sessions year x £20 = approx £6000 per year Heating / electricity 144 sessions x £3 = approx £500 Total approx = £6500 per year Variable costs Refreshments 408 sessions x £4 = approx £1600 + £600 cakes (200 x£3) = £2200 (almost half cafés have cakes donated by Inner Wheel/ WI/Carers) Stationary / posters / paper / ink / stamps 17 x £100 = £1700 Volunteers using own mobiles / landlines, estimate 85 vols x £10 per year = £850 Resources, games, CDs, materials 17 x £100 = £1700 Total estimate per year= £6450 Expenses Cafés are free but there is a donation box and probably about 7 cafes have a raffle which people buy tickets for = £1-2 per session People often travel a minimum of 5 miles = £3(petrol) – £10 (taxi) per round trip (although some cafés have volunteer drivers (Rotarians) who transport guests free of charge). Costs incurred range from = £0 – £10, needs further research for a more accurate estimate.
Pros	Diversity – a range of provision and therefore choice. Informal support, leading to the building of social & supportive networks operating outside Memory cafés and times, community-led so local identity. Flexible and responsive – can accommodate rapid change.
Cons	Sustainability questionable, need governance to attract funding Insufficient selection of volunteers, lack of diversity. Some volunteers are resistant to training – lack of mutuality with cafe guests Lack of clarity around aims, purpose of cafes insufficient safety standards, i.e. lack of CRB checks, confidentiality policy & awareness of Adult Safeguarding procedure The ‘critical friend’ approach, how to enable groups to be community & peer led, but to adhere to and understand quality standards….. asking non-professional non-profit making sector to deliver service with ‘professional’ standards.
Dos	Start slowly, building strong community links and involvement Be clear from the beginning and agree purpose, standards, good practice
Don’ts	Don’t get disheartened – community working takes a lot longer than people expect and any group has to go through ‘forming-storming-norming-performing’ Don’t think it can all be done on the cheap with volunteers – you get what you pay for
Recommendation in respect of approach	Strongly recommended
Improvement suggestions	Involvement in the setting up of memory Cafes from the outset is essential as retrospective intervention can be difficult, resisted, and also time-consuming (taking people with you as you shift goal posts).

Area	Torbay
Contact	David Mannion
Email	[email protected]
Type of site	Peer Support Group
Objectives	To develop new Memory Cafes in each of the towns To improve existing Peer Support delivery To develop new Peer Support Services to meet the needs of people with dementia Evaluate
Run by	Peer Support Project Worker: design, implementation, start up, venues, recruitment staff and volunteers, training, publicity and promotion. (0.8FTE) Café Facilitator: Facilitate cafes, ongoing support (0.6FTE)
Deliverables	Complete rethink of Peer Support delivery in Torbay; Clarity about Memory Café purpose, target client group and menu for ensuring adherence to ‘specification’. Services Orientation Group (partnership Memory Clinic – information from OPMH and Alzheimer’s Society, personal introduction to Peer Support services for people with dementia.) Weekly professionally facilitated Memory Cafes to specification, in 3 towns Weekly concurrent Support Groups (carers and people with dementia) offering more ‘intensive’ Peer Support Torbay Dementia Leadership Group – a voice for people with dementia Weekly Social Group (carers and people with dementia – peer support without overt ‘dementia’ focus) 3- tier Local Evaluation Self-directed Carers Questionnaires Guided Conversation Technique with people with dementia Dementia Care Mapping
Placement of services	Car parking / public transport emphasised in all cases. In town with natural ‘centre’ (Brixham) this was overruled – successfully. Church halls used – tried unsuccessfully to establish suitable secular venue.
Uptake of services	Existing service > 50 per week (evolving into social group) New Cafes currently 10 – 15 per week each (x2) (promotion on hold until differences between models resolved and way forward clear) Going forward Cafes < 20 per week x 3 Social Group > 50 per week Leadership Group 6 – 8 people with dementia ongoing Support Group and services orientation group as per demand
Project strength	Open ended phase two enabled initial assumptions to be challenged and developments to be based on stakeholder input
Learning	Memory Café is complex. Consistent facilitation needed to maintain focus on people with dementia. Carer ‘leadership’ and ‘grouping’ had led to perception of exclusion for some people with dementia – ‘Widespread’. Café can became too successful numerically – requiring intensive ‘facilitation’ whilst limiting individual focus and ‘engagement’. Who is Peer Support for? Strategy needed to address on ongoing basis. Numbers of service users are not an accurate way to evaluate Peer Support. The bigger a service gets its less likely people with dementia will continue to be ‘engaged’ (past a certain point) Linkage needed between diagnosis and uptake of Peer Support. Many people find it challenging to attend (initially) Different people and those at different stages of dementia benefit from different types of ‘support’
Benefits	Strategy to ensure Memory Café adherence to primacy of engagement of people with dementia on an ongoing basis. Input into service delivery Directly through Dementia Leadership Group (Initially: Peer Support Pathway feedback; identification of gaps in provision – Reduction in stigma). Focus on people with dementia ‘contributing / leading’ at Peer Support groups Post diagnosis follow up leading to menu of options through new pathway = reduction of gaps in provision
Early returns from new cafes	80% of people with dementia in good mood after café – other 20% ‘sometimes in a good mood’ 75% of carers have made friends 55% increase in ability to cope with caring 63% increase in carer mood and spirit 62% credit service as helping people with dementia feel ‘part of community
Drawbacks	Local partnership for Peer Support for people with learning disabilities and dementia abandoned as replicated by University of Edinburgh and Joseph Rowntree (also prevalence concerns) Concerns over whose needs a ‘Memory Café’ really meets. This led to a new Pathway of service
Pros	Involvement of people with dementia and focus on their needs as a priority Provision of a menu of services to serve people at different stages Professional facilitation to enable consistency of service provision and adherence to specification
Cons	Questions over sustainability going forward.
Costs	Cost burden to health/ social care: Facilitated cafe 20 attendees = less than £10.00 aver. per person /event (approx £9,500 inclusive per annum for a weekly cafe – scale may reduce cost) Cost burden to user: nil aver. per person /event – Social Group likely to incur user cost – Services Orientation Group will be hosted at OPMH (possibly Support Groups)
Dos	Quantify outcomes required by people with dementia and evaluate service to ensure other needs are not taking over Involve people with dementia in service design Establish Peer Support ‘Support Service’ on a professional basis to ensure accountability and consistency of service to people with dementia
Don’ts	Don’t underestimate complexity of peer support if people with dementia are the primary focus (we all have a way to go!)
Recommendation in respect of approach	Recommended
Improvement suggestions	None