Navigating dementia in volunteers

Volunteer health issues

In the world of volunteering, we encounter a diverse range of people, each bringing their unique strengths and challenges.

Over the years, I've encountered various situations that require a delicate balance of empathy, understanding, and professionalism, none more so than when you start to see signs of dementia in volunteers.

As our population ages, it has become more common to see the development of dementia in volunteers. Dementia is a deeply complex and challenging condition. It impacts not only the individuals who are diagnosed with it but also everyone around them. When you see a volunteer beginning to exhibit signs of dementia – especially a volunteer who has been with you for years – it can be emotionally charged and difficult to handle.

“Peter” was a long-time volunteer at his local food bank. Over the almost 35 years of his service, he had done everything from running a forklift to advocating to his Member of Parliament. He was a favourite at the organization, and was often seen mentoring and training newer volunteers.

The first sign of something wrong was when the volunteer coordinator walked into the warehouse one day. The forklift was running, with a crate lifted halfway to a shelf and three more sitting on the floor. No one was around. She found Peter having coffee in the lunchroom, where he insisted he had finished putting everything away.

She started to notice other things. She told me she wasn’t sure if it was because the “forgetfulness” was getting worse, or just because she started watching for it. In any case, it got to the point where she assigned another volunteer to the warehouse, and no longer sent him on errands in the food bank’s vehicle. That was a good thing, as Peter’s granddaughter told her a short time later his driver’s licence was revoked. He hadn’t told her. That was when she called me.

My advice? First and foremost, educate yourself and your team about dementia. Understanding the symptoms, stages, and challenges associated with this condition can provide valuable insights into the experiences of those affected. I’m no expert, but there are resources out there, from workshops to informational pamphlets to a talk with your own health practitioner, which can enhance your knowledge and help you support both the volunteer and your team effectively.

The better you know the condition, the more comfortable you will be in dealing with it in volunteers.

Second, talk to their family. When you suspect a volunteer might be experiencing dementia-related challenges it's crucial to involve the volunteer's family or close friends. The volunteer’s support network can provide valuable insights into their behavioural changes. Collaborating with the volunteer's loved ones can help you make informed decisions while still respecting the individual's privacy and dignity. Once you have a clear understanding of what stage they are at, you will be much farther ahead in coming up with a strategy for dealing with it empathetically.

Third, I've found modifying the volunteer's role can help keep them involved longer. Consider what tasks would align with their current abilities. Focus on activities that promote a sense of purpose and accomplishment, but don’t put them or anyone else at risk. Simplify tasks, provide clear instructions and offer additional support. It also helps if you can assign another volunteer to work alongside them. Encourage the other volunteers to show empathy and understanding. Emphasize the importance of patience and flexibility when interacting with the volunteer. That way everyone involved is aware of the situation and equipped to handle it with grace.

Finally, know how to let them go with empathy. When it becomes clear the volunteer can no longer continue due to the progression of the dementia, it's important to handle the transition with the utmost care. Express your gratitude for their contributions sincerely, emphasizing the positive impact they've made on the organization. You may even want to have a small party or other event to honour them. Offer them the opportunity to come in and visit regularly so they don’t feel like they’re missing out on seeing friends or having social interactions. Keep in touch after they leave, and invite them to special events like fundraisers or appreciation dinners.

Peter’s volunteer coordinator slowly scaled back his involvement as his abilities declined. She assigned another experienced volunteer to help him out (under the guise of Peter showing the volunteer how to do things). When Peter’s dementia reached the point where he wasn’t able to do even the simpler tasks, she arranged a “retirement party” for him, inviting not only the food bank’s staff and volunteers, but also Peter’s children and grandchildren. For the next year or so, she stayed in touch with him and his family. Peter passed away in 2022.

Addressing the challenge of dementia in volunteers requires a compassionate and proactive approach. By educating yourself and others, assigning ability-appropriate roles, and collaborating with their personal network, you can navigate this delicate situation with grace and empathy.

If you’re dealing with this, or a similar situation, let me know.

This article is written by or on behalf of an outsourced columnist and does not necessarily reflect the views of Castanet.

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About the Author

Karen Knight has provided volunteer recruitment, engagement and training for not-for-profit organizations for more than 25 years.

Her professional life has spanned many industries, working in both the private and public sectors in various leadership positions.

Through her passion for making a difference in the world, she has gained decades of experience in not-for-profits as a leader and a board member.

Karen served in Toastmasters International for more than 25 years, in various roles up to district director, where she was responsible for one of the largest Toastmasters districts in the world.

She oversaw a budget of $250,000 and 300 individual clubs with more than 5,000 members. She had 20 leaders reporting directly to her and another 80 reporting to them—all volunteers.

Karen currently serves as vice-president of the board of directors for the Kamloops Therapeutic Riding Association.

After many years working and volunteering with not-for-profits, she found many leaders in the sector have difficulty with aspects of volunteer programs, whether in recruiting the right people, assigning those people to roles that both support the organization’s mission and in keeping volunteers enthusiastic.

Using hands-on experience, combined with extensive study and research, she helps solve challenges such as volunteer recruitment, engagement and training for not-for-profit organizations.

Karen Knight can be contacted at [email protected], or through her website at https://karenknight.ca/.

The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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