“Doing it for ourselves” Sarah Vallelly, Intelligence Manager, Housing 21, Cindy Glover, Group facilitator, Mental Health Foundation / Housing 21 & Lauren Chakkalackal, Research officer, Mental Health Foundation

Overview Introduction –Why Housing 21 supported the project –About the Mental Health Foundation The Self Help Groups –Frank’s story (short film clip) Project evaluation –Learning so far –Lessons learned and recommendations What next? Discussion –Information and sharing ideas

Why dementia matters Over a million people living with dementia in the UK by in 3 of us will have dementia in the last year of our lives ¼ people in hospital and over 70% of people in care homes have dementia –Two thirds of people with dementia live in the wider community –25% of people in Housing 21’s extra care courts have dementia Dementia costs £23 billion per year –£8 billion is informal care and support

Loneliness and isolation 62% of people with dementia feel lonely Increased stigma - diagnosis can lead to people with dementia being excluded

Manage 18,500 homes 1,500 homes in development 28, 000 customers 120,000 care hours per week Turnover of £222 million 6,500 staff What we do…

Our credentials 2006 – Published “Opening Doors to Independence” 2008 – recruited first Dementia Voice Nurse 2011 – joined Dementia Action Alliance 2011 – ‘Self Help’ partnership with Mental Health Foundation 2012 – opened Beeches Manor 2012 – expanded Dementia Voice Nurse service In 2014 we celebrate our 50 th anniversary –Commitment to roll out Dementia Friends training to all staff

Why Self Help? Peer support model for people with dementia proven in other settings and services Partnership with the Mental Health Foundation Quality of life for people with dementia can be sustained through social interaction Meaningful activity and engagement is key to a good later life –For people with dementia as much as anyone else –Challenges and opportunities of involving people without cognitive impairment

About the Mental Health Foundation A UK-wide charity committed to enabling people to live mentally healthier lives Social research and development work, public information, policy and influencing work Life long mental health issues, problems and conditions, and issues affecting people with learning disabilities (including mental capacity)

How the groups work and the challenges met Three groups in three extra care sites in London Secondment of a specialist facilitator to set up groups of people with mild / moderate onset dementia User led (involves families and carers) Aim to be sustainable after the facilitator has left Meet for two hours weekly for initial 6 month period

What did we do in the groups? The group is THEIR group not mine Weekly theme often based on the previous week Developing and implementing practical solutions New activities- adapting previous skills Making connections with the local community How to and activity Resource pack

What group members say….. “Despite my physical frailty, my trembling and my poor memory, if we stand together we are strong. We can face the challenges we face. Let us be strong because we are together and that is what makes us strong".

Frank’s story (short film clip) A group participant contributes.

What is the aim of the evaluation? To examine … Impact of the groups on mental wellbeing of participants Impact of the groups on independent living skills of participants Whether people participating are able to live with the same level of care and support Sustainability of the group after the facilitator leaves at 6 months

Demographic of the groups Across all 3 groups… Average age of group members – 83 (min: 66, max. 97) 21 participants; 13 female and 8 male Before groups began (T1): –6 participants hearing, visual or speech problems; or combination –11 participants physical mobility issues –3 stroke survivors –1 participant Korsakoff syndrome ; 1 participant Parkinson’s During the course of the evaluation -3 participants passed away -3 moved into another nursing home

Some of the findings so far….. Enhanced well-being at 6 months (T2) “ I’ve had the best time of my life [here]” Members reported doing new things as a result of ideas shared in the group “ It’s given me more confidence to do things…” Members reported coping strategies learnt were very useful “ I’m remembering things more now because I’m thinking more about it…what I’m doing at the time” 2 of the 3 Groups continue to run with the help of volunteers, H21 staff and other tenants

Emerging Lessons Number of people living in schemes may have probable dementia but are ‘undiagnosed’ Psychological needs of tenants, such as loneliness and isolation are often not addressed Interventions like self-help group address psychological, social and emotional needs of residents “ …seeing different faces, different people, learning different things, we learn from each other.”

What next? Spring 2014Spring Resource pack and final evaluation report to be published Funding bid submitted to Big Lottery Fund to expand the service across the South East