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Meet the team: Dementia supporters

Also:

  • The idea came from Larry Gardiner, with the proposal then being developed by Donna Mackenzie, Jane Fossey, Deborah Humphrey, Ros Alstead and Lynn Mars.
Idea

Working in partnership, people with dementia, their families, ‘Getting Heard’, voluntary sector organisations and Oxford Health NHS Trust  will run a 1 year pilot to develop, embed and evaluate the outcomes for a peer support and self advocacy group  project for people with lived experience of dementia and their carers within the OX3 area with an aim of creating a sustainable and replicable model which can be expanded to be utilised  across Oxfordshire (and beyond) once shown to be valued and successful.

Volunteers will be recruited locally to the group and individualised training will be developed to support their engagement as local community members, peer supporters and self advocates.  The groups will provide a regular welcoming, safe and non stigmatised environment to interact, socialise, empathise, aid memory, knowledge share, offer support and advice and empower attendees to share their experiences and take responsibility for their own health.

Working alongside the big lottery funded ‘appointment buddies’ initiative in the OX3 area as well as dementia support provided by third sector organisations and local services such as GP practices, pharmacies, the church and Oxford Brookes University the groups will contribute to the growth of community involvement and empowerment with the added value of self advocacy and peer support within this area of depravation inside Oxford.

Opportunity being focused on

Dementia is a condition which requires support across the life course of the disease and people with lived experience of dementia tell us they want to be enabled to manage their co-morbidities, avoid repeated hospital re-admissions and prevent premature institutional care being required. This fits closely with national policy on dementia which aims to improve the lives of those with lived experience of dementia and ensure that they can live a life that is fulfilling and meaningful. When exploring the needs of people with dementia we have heard that they want to be able to live well with their condition and be able to support themselves and others well.  We would like to empower the community to take responsibility for their own health.

This project has been born out of the ideas and dedication of a dementia champion in the  OX3 area who has been an integral part of the partnership work so far and instigated this bid.  We support the principles outlined by people with dementia described by the Dementia Action Alliance “I statements” and believe peer support and self advocacy are key elements of these principles which are not currently being fulfilled.

Proposal

We plan to develop a peer support and self advocacy group focusing on those with lived experience of dementia as part of a local programme aimed to support enablement and empowerment for community members and in keeping with the current established and expanding community “healthy town” work.

These groups will be run from the local neighbourhood community centre, which is the hub of the OX3 area with a doctors surgery, classes, events and third sector organisation based at the location to ensure ease of access and a non stigmatised environment with the benefit of utilising the expertise of an established and trusted community organisation, Getting Heard, who have 29 years experience of advocacy across Oxfordshire to engage a hard to reach population.

Initially we will invite those who have been in contact with the local GP’s, OHFT services, Getting Heard and other third sector organisations to attend a supportive setting with trained advocates in order to develop their own self advocacy skills and peer support capacity.

Funds will be utilised to provide accommodation (room hire), reimbursement for attendees expenses and care expenses, transport which can be provided by the local community association, and refreshments as well as for activities and knowledge share session which will be decided by members as the group evolves. 

We hope this partnership working will enable us to grow the model across Oxfordshire by utilising the community volunteers who are already part of Getting Heard, OHFT and numerous third sector organisations.

The project will be supported and evaluated through structured interviewing which would be conducted by the OHFT Patient experience and involvement team and is supported by the newly launched Dementia strategy 2017-2022.

 

Benefit we hope to achieve

Volunteers will be local community members who could have lived experience of dementia or be a care giver for someone who has lived experience.  They will benefit by gaining skills and knowledge transfer in a supportive, welcoming  and safe environment, without stigma or judgement.  This improves socialisation and regular interactions can prevent loneliness or low mood. Memory can be aided and slower symptom progression can be supported by interaction/ stimulation, self care and connection to other services/ signposting. Shared experiences and the power of “I’m not the only one” can increase self agency and self advocacy which itself can help with service demand.

The partnership will benefit by working across organisations to provide and enable community support for those living with dementia and their carers. Education around dementia and a connection to service users can help to ensure people feel valued, and training (new/enhanced skills) can help to prevent burnout in carers

The wider system benefits could include a reduced number of admissions, bridge gaps between acute and community care, support people to live well with dementia and keep people functioning for longer and possibly to help prevent deaths by preventing slips and falls, encouraging hydration and encouraging good nutrition.  It has additional benefits that it is a model which can be expanded and developed into other client groups by utilising a toolkit for how to set up and sustain community groups. 

 

Benefits to the Q community

The Q community would benefit from insight into this project to evidence whether peer support and self advocacy is capable of improving wellbeing and health for a constituency of patients with progressive neurological deterioration.

The partnership will share their challenges and successes as well as all developed training materials for use across the network as learning tools.  We will share videos of the project process at different stages as it progresses as well as structured interview feedback as the group is developed and adapted to suit the needs of the members.

 

 

Further information

Q community Bid -dementia (DOCX, 20KB)

Comments

  1. Hello! Great to see your peer support bid here. I’m sure Larry has shared and fed in the Q Lab learning around peer support too. Really interesting link shared by Noleen – looks like a great initiative. I understand that Max Oosman and Larry have already been in touch – you might find it useful to share your learning with each other in future too, as you’re doing similar work.

  2. Dementia NI is a patient empowerment / advocacy group founded by people with dementia in Northern Ireland. They run support groups across NI, engage in advocacy work, and provide dementia- friendly training to other organisations - all these activities are led by people with dementia. We were recently involved in a realist evaluation of their service. I know they would be willing to share their learning with you!

    https://www.dementiani.org/

     

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