Helping other possibilities emerge

From little things big things grow

Younger Onset Dementia Key Workers are building capacity across Australia.

Stephen Meredith and Aland DunstanCapacity building is an essential component of meeting the unique needs of people living with younger onset dementia, their carers and families. Whether it is volunteering activities, hobbies, health or social interactions Younger Onset Dementia Key Workers are involved in working alongside the person with younger onset dementia and those around them to identify potential activities and partners who can help create an inclusive environment for them.

Recently Dementia Australia South Australia’s Younger Onset Dementia Key Worker program helped Alan, a man living with younger onset dementia, to secure a volunteer position at a furniture workshop that manufactures and assembles a range of timber furniture as well as packaging and labeling for South Australian companies.

With Alan’s wife working during the week the couple explained to their Younger Onset Dementia Key Worker that it would be beneficial if Alan had more to do during the week. Alan mentioned he had previously enjoyed volunteering as a graffiti removalist.

As goal setting is a cornerstone of the Younger Onset Dementia Key Worker program Alan, together with his Key Worker, set a goal for Alan to participate in volunteering once a week.

From this one goal Volunteering with people with dementia was created. In collaboration with Minda, a South Australian disability support organisation, Alan’s Younger Onset Dementia Key Worker helped modify one of Minda’s existing supported employment programs to include people with younger onset dementia such as Alan.

 Alan has consistently volunteered at the workshop once a week for the past ten months and his wife notes that Alan is always eager to attend and is often ready and dressed to leave well ahead of time.

Dementia Australia ACT’s Younger Onset Dementia Key Worker program has partnered with two organisations to create new programs to help younger onset dementia clients meet their goals.

One is a partnership with Greening Australia where people with younger onset dementia are given nursery tasks such as native seed cleaning, weeding and supporting the growth of more than 30 species of flora while also offering them the chance to catch up socially with other people with younger onset dementia.

 The program has grown from a Younger Onset Dementia Key Worker working with one man diagnosed with frontotemporal dementia whose goal was to volunteer in the field of gardening to a partnership supporting ten men to attend the Greening Australia nursery each week.

Dementia Australia ACT also partnered with Northside Community Services and the Majura Men’s Shed to develop a dementia-friendly environment for people with dementia to participate in a new woodworking enterprise.

The program provides unique support for the skills and employment backgrounds of its younger onset dementia team members to be maintained and maximised. Each week, one group cuts the wood products into kit form and the other group prepares the products for sale by sanding, assembling, varnishing and packaging the final products.

The ACT Younger Onset Dementia Key Workers hope to incorporate a third team to participate in the marketing and selling of their wares.

Physical exercise was the goal of two Victorian Younger Onset Dementia Key Worker clients that inspired their Younger Onset Dementia Key Worker to build a relationship with the YMCA and develop a younger onset dementia education and training program for gym staff.

The program began with a personal trainer working with the two younger onset dementia clients once a week and has now been rolled out to nine gyms where it benefits 13 Victorian younger onset dementia clients. This allows most of their fit and active clients, who would otherwise not be able to participate in exercise, to remain active which ultimately helps with their dementia symptoms and progression.

Dementia Australia QLD’s Younger Onset Dementia Key Workers looking to help clients with a goal of social interaction identified potential capacity building opportunities through Collaboration Community, a community-based organisation that works to ‘develop and deliver local services and activities in response to the issues and opportunities that life can present.’

 This new partnership will see the launch of a weekly social program specifically for people with younger onset dementia. A group facilitator with experience supporting people with younger onset dementia and their families was recently recruited through a selection process with Younger Onset Dementia Key Worker involvement and the first of these weekly social programs will commence in February 2016 with ongoing support, information education and referrals from Dementia Australia QLD’s Younger Onset Dementia Key Workers.

Capacity building also extends to creating programs for those caring for people with younger onset dementia.

In NSW, a discussion between Dementia Australia NSW, Younger Onset Dementia Key Workers and relevant representatives from Western Sydney NSW Health and Anglicare about the lack of localised social support options in their area for younger carers of people with dementia led to the formation of the Western Sydney Younger Carers Group.

A group of younger carers, each with a parent or a grandparent living with dementia, were invited to a planning day and the outcome was a social program where group members (aged between 27 and 36) meet up for outings such as dinner and bowling, meet online via a secure Facebook page and support each other or just spend time with other people who understand their experiences.

These and many other capacity building activities undertaken by Younger Onset Dementia Key Workers around Australia provide people living with younger onset dementia the opportunity to engage in their community and participate in meaningful activities that recognise and utilise their unique skills and experience. These capacity building activities and initiatives are a big step towards building dementia-friendly environments that can have enormous positive impacts on people with younger onset dementia, their carers and families.