Volunteering: Meaningful Engagement for People with Dementia

 

The idea: Tara from Alzheimer's Australia reports on the organisation and outcomes of a project to involve people with early stage memory loss as volunteers for other organisations. 

My name is Tara Stringfellow and I am from Perth in Western Australia.  I have been working for Alzheimer’s Australia WA for the past four years.  I am the Early Intervention Coordinator and my work is predominantly around supporting people with dementia and their families when they have had a recent diagnosis.

In 2010 the organisation had some extra funds available and we were given the opportunity to be creative and look at piloting some projects that we had only ever dreamt of.  For me it was about providing opportunities for people with dementia to volunteer in the community.  Myself and a colleague, Desirée de Graaf, worked on our Volunteering Pilot Project (VPP) from March 2010 until July 2011. 

Through working with people in the early stages of dementia we recognised that it is a time that can be punctuated by losses.  It may be a loss of friends and social networks, occupation, financial independence, the ability to perform tasks previously done, verbal expression, independence and control, interest and motivation.  It can also involve changes to roles and relationships. For some this may lead to a diminishing of their sense of self and in turn self esteem.

We wanted to be able to provide opportunities to build a person’s self esteem, to provide them with opportunities to meaningfully contribute, to make a difference, to feel included, to be useful.  We recognised that volunteering could be a way of achieving these goals. It was hypothesised that if volunteering was beneficial for people with early stage dementia then we would expect an increase in their self esteem and quality of life. 

Our original pilot involved six people with dementia, four males and two females.  Three people were under 65, two in their seventies and one gentleman in his eighties.  All participants were diagnosed with dementia between 2008 – 2010 and all were in the early stages.

It was really important to get the correct match as far as volunteer, position and organisation. We explored a person’s strengths and interests and then matched these with appropriate volunteer positions which ensured a person-centered approach. Initially we experienced some apprehension from the organisations we approached.  This was usually due to a lack of understanding about what it means to have early stage dementia.  Once we found a position the volunteer was interested in and an organisation who was willing to be involved we would meet together to discuss the position and, if appropriate, for all involved to work out how to proceed.

Another important aspect of the Volunteering Program was to pair the person with a support worker from Alzheimer’s Australia.  Getting the right fit was also very important.  The support worker’s role was about supporting the person to volunteer and facilitating their integration into the organisation.  Specific instructions were dependent on how much support the volunteer felt they needed and the nature of the voluntary work.  Having a support worker involved was often seen as a bonus for organisations too as they got ‘two volunteers for the price of one’ and it lessened concerns about perceived risk for everyone concerned. 

We interviewed clients before and after their participation in the VPP to find out whether there were any self-reported changes to their quality of life and self esteem.  Our results indicate that the VPP provides a positive experience for people with early stage dementia. There were also positive outcomes reported for the organisations where they volunteered, for the support person and even for the support workers who worked with the participants.

In the post interviews most participants reported an increase in quality of life and self-esteem. They were all looking forward to their volunteering each week and felt they were making a difference. Regardless of their role, all the volunteers felt a sense of belonging and inclusion in the organisation.  Increased self-esteem and the sense of contribution to the organisations were just two aspects that participants attributed to their improved quality of life. Other aspects identified were increased energy, better mood, improved communication, something to look forward to, something to be proud of and an opportunity to provide care for others.

Although it was not the focus of this research there were other self-reported benefits. Some support people identified that although they had not considered respite before, this was an added benefit for them and they recognised this as a positive way of introducing respite early on. In addition, some support people also reported reduced stress and felt that they were coping better with their support.

Organisations involved in the project reported an increase in their knowledge and understanding of dementia. Although there was no formal education provided, volunteers often felt comfortable sharing their experiences of living with dementia. The support workers were also advocates for the volunteers within the organisations when they were not able to speak for themselves. Therefore, at a community level the program also raised awareness about dementia and how to support the capabilities a person still has.

Overall the Volunteer Pilot Project was a rewarding experience for everyone involved. It was encouraging to hear the impact it had not only on the participants, but on their families, the organisations and the support workers. It was a privilege to be involved and for me it highlights the importance of providing opportunities for people with dementia. 

If you would like more information about how we established the program, or individual case studies, please email me and I can forward you a copy of the full report.

I hope that this can be a useful tool for other service providers and that it will encourage others to explore different ways of supporting people with dementia.  Or perhaps if you are a person with dementia reading this you can look into volunteering opportunities in your own community.  If you have any questions or feedback I would love to hear from you.

Tara

 

+61 8 9388 2800

Editor's Note: The full project report will be available online shortly and we will post the link here. In the meantime, please e-mail or telephone Tara for a copy of the report.

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