Living Well with Dementia a community based social inclusion programme

Description

The Living Well with Dementia programme (LWwD) is an initiative which develops and delivers innovative services and supports to people living with dementia and their families in their communities. Fundamental and central to the success of the programme is respect for the dignity, welfare and wellbeing, will and preferences, beliefs and values of each person living with dementia, promoting at all times their safety, social and cultural values, and their potential. The LWwD programme is a community-based programme which focuses on the strengths and personhood of the individual. Our vision is: that people living with dementia live in a community that respects, supports, values, and empowers them, and a community where they can participate in a safe environment as a valued citizen.
Over the years, and with the help of our partners and volunteers, LWwD has pioneered a wide variety of supports for people with dementia and those who care for them. These include;
• Public Awareness training • Information and education • Social Events • Community–based social activities. Our primary focus for the past number of years is the provision of several weekly activity groups that are open to all but are particularly welcoming to those with a dementia diagnosis.

LWwD currently runs several weekly activity groups – our Sweet Memories Choir, Keep Moving Keep Well Physical Exercise group, Aces bridge club, Sunshine Dancers Movement to Music and our Friday Friends Art group – all of which are inclusive of people with dementia. These activities take place in community settings and are led by trained professionals and supported by a large group of volunteers. Volunteers are the cornerstone of the Living Well with Dementia programme. They are critical to our success and bring expertise, experience and a unique perspective to the socialisation and activities component of LWwD. We currently have thirty-five active volunteers, many of whom have been involved with us since 2013. All activities are tailored to allow those with a dementia diagnosis to participate. Our activities have been shown to increase self-awareness, encourage social interaction, help with depression, provide fun and healthy self-expression, maintain and, at times, improve memory and cognitive function.
LWwD encourages all people to help maintain good brain health by increasing their levels of socialisation and engagement with others. One hour of social interaction a week or ten minutes per day can decrease the risk of cognitive decline. Our social networks both support and challenge our brains. Building our social networks and participating in social activities are like exercises for your brain, they keep your mind agile and active and can also be cognitively demanding. Socialisation also creates a feeling of inclusion and reduces loneliness and isolation. Research has found that satisfaction with social networks and engaging in social activities helped older adults maintain their cognitive abilities.
The Living Well with Dementia programme has been instrumental in improving the lives of people living with dementia since its inception in 2013. Dementia is the second largest adult health concern globally. In Ireland, the level of dementia is projected to more than triple over the next 25 years (from 50,000 to 150,000 people). Unfortunately, due to lack of education and awareness there is still a significant stigma associated with a diagnosis of dementia, and persons with dementia, their families and carers are often left isolated and afraid. The aim of LWwD is to reduce the stigma associated with dementia and to be a source of empowerment, education and support to people living with dementia, their family members, health care workers and members of the public. Our philosophy is to build relationships and friendship for people on their dementia journey and to create a safe space and a sense of belonging, for our participants and for those caring for them.

Aim of Initiative

The aim of our programme is to listen to the person with dementia, their primary carers and families, in order to identify, develop and deliver effective supports. Our goal is to ensure that people with a dementia diagnosis are supported to remain living at home and active in their community for as long as possible. Our key message is to See the Person not their Dementia.

Who is it aimed at

Our programme is open to all older adults but is particularly welcoming to those with a dementia diagnosis, their families, and carers.

3 Steps critical to success

1. In 2012 there was an open call from Atlantic Philanthropies and Genio Trust for funding applications for dementia inclusive programmes. We devised and submitted a detailed project funding proposal, including scope, objectives, timelines & budgets and were one of only four programmes throughout Ireland that were successful in the funding application.
2. We built a strong consortium of interested parties to include people with dementia, family carers, clinicians, geriatricians, local business representatives; garda representatives, community representatives. Input from the consortium members was critical to the success of the project and to understanding what outputs would best serve the target group.
3. Develop, trial, and deliver innovative and appropriate supports to people living with dementia and their families. Trial these initiatives for a 3-year pilot period and provide regular reports to the funders.

3 Challenges in Planning / Delivery

1. As dementia is a progressive disease and differs for each person it is impossible to determine how long each individual will remain with the programme. Strong attachments are made, and it can be very difficult when we invariable find that due to a progression in their dementia some people may no longer be able to continue with our services
2. Maintaining the programme during the Covid pandemic was particularly challenging and all activity groups moved to a Zoom platform. Zoom was new to everyone but there was an added dimension of difficulty for people living with dementia which proved demanding for all involved. However, it was critical that we maintained engagement with as many of our members as possible during this challenging period. The effects of the pandemic were particularly detrimental to our age cohort and the programme required a complete restart post Covid.
3. While the programme is grant aided by the HSE we also rely very much on donations and fundraising events to supplement this income. We additionally rely completely on the support of our volunteer team as there are only two paid members of staff running the programme, one full time and one part-time.

3 Outcomes / Benefits

1. The success of the pilot project meant that research and learnings have been embedded and mainstreamed by the HSE since 2016.
2. Approximately 350 people with dementia have participated in our activity programmes since 2016, with many remaining with us for several years.
3. Feedback and testimonials from participants and family members is hugely positive and emphasises the enormous benefits to those involved. Some family members have in fact become volunteers with our programme when their loved one passed away.