My idea

Dementia is the biggest global challenge of our time. It knows no bounds and it can affect anyone of us.142 million people worldwide could be affected by 2050.

To date we only have symptom modifying therapy for the disease and we are a long way from finding a disease modifying   therapy .It may not happen for a long time.

This is why we need to concentrate on those people who are now living with Dementia and ensure they live well and those caring for then feel supported in doing so .We need more social research which is co-designed with those living with Dementia and their carers.

Further more one third of dementia is preventable .We need to focus on lifestyle issues such as managing obesity ,excessive alcohol consumption and lack of exercise. We need to promote the 5 ways to well being .Recent research from the lancet has suggested that if someone has severe hearing loss they are 5 times more likely to develop dementia .It also suggested of ways to increase our brain reserve and how further education can be a preventative measure to keep Dementia at bay. We need to invest in more social research such as Created out of Mind.

My Proposal.

The intention is to create peer support for people living with dementia and their carers.It will be a  co-design approach  in collaboration with health care professionals, care providers and a committed groups.

This would be achieved by connecting and learning from the work in Central Lancashire who had a recent ‘Always Event’ focusing on the needs of younger people with Dementia. This is a multi agency approach with Lancashire County Council Alzheimer’s Society, Age UK and Lancashire Care NHS Trust. Younger People with Dementia were asked  what  their 5 service priorities are. Their response were as follows:  Improve initial contact after diagnosis. A community link worker . Information leaflet. GP to be more sensitive to their needs and keeping in touch with each other and the community . We would  connect  and learn from the Dementia Engagement and Empowerment Project(DEEP) which  connects  and involve/influence groups of people with dementia .They work together to raise awareness about dementia-to policy-makers and decision-makers ,to influence local dementia practice and strategy and to challenge the existing narrative about what it is like to live with dementia. We would like to focus on local issues and young people with dementia, act as a lever for change and network nationally.

We would like to learn and connect with other groups in the North West such as the one in Stockport manage by  Pennine Health care NHS Trust and Stockport Council-Early Dementia Users Co orperative  Aiming to Educate (EDUCATE).

We would like to connect with similar projects via the Q exchange as the one in York We would make use of the Q space online.

Benefit

We would like to focus on the triple aim of the NHS 5 year plan which are improve the patient experience and improve the population health and being cost effective. To start with we will focus on improving the experience of those living with Dementia and their carers.

We will create a sense of solidarity, build confidence  , empower and increase self-esteem.

Improve health and well being ,build on the 5 ways to wellbeing-Connect. Give-Learn -Be present and Be Active.

Enable people to ‘give back ’,to leave a legacy. Improving services helping to spend money on the services that people need and want .Using people’s skills and experience and their unique expertise from the ‘lived experience’ .Seeing and hearing ’real people’ can challenge stereotypes. People have a role ,are occupied and maintain a sense of value and purpose.

We will use the Donabedian  concept of Structure, Process and Outcomes principles.

Benefits for Q community.

Other Q members would have a better understanding and awareness of peer support for those living with Dementia. We propose to engage with other Q members and receive their comments ,advise and support.

We will connect with similar projects on the Q Exchange such as the one in York where a lay member of Q from Oxford has the intention of submitting a similar project like ours .Contact has been made with this person who is part of a peer support group already and we have pledged to continue on that discovery journey.

 I was one of the first participant with the Q improvement Lab which was a space for people involved in peer support to share ideas ,learning ,as well as to make progress on  some specific pieces of work that are designed to make progress on the peer support challenge .I have learnt a lot from that experience and would transfer that knowledge in our project now.

 

Ref: Livingston, G Sommerlad, A Orgenta,V (17):Dementia prevention, intervention ,and care. The Lancet,390(17),2673-734.

Created out of Mind-Julian West-UCH-Wellcome