Supporting caregiver wellbeing - Brieonie's story

I’m looking for people currently caring for someone with dementia to participate in this research. Information on how to participate can be found here.

Dementia is close to my heart and I feel researching it is a must.

When my Grandma’s memory began to fail, it was a given that my Grandpa would care for her. They’d been married for 50 years and in his words; “She’s looked after me all these years, now it’s my turn.”

For the next 8 years, they lived together in their family home, with Grandpa taking full responsibility for Grandma’s care, until he could no longer manage to do so.

At this point Grandma moved into full time care and my Grandpa spent the next 3 years visiting her every day, feeding her meals, and keeping her company.

Before Alzheimer’s, my Grandparents had busy social lives. They had lived in the same community for most of their lives and had a lot of long-time friends. Coffee group was a highlight of their weeks.

Initially following Grandma’s diagnosis, things were much the same as normal. They still met their friends for weekly coffee group and travelled to see their children and grandchildren in different cities, even taking a long-awaited trip to London.

Of course, as Grandma’s dementia progressed, her day to day social life became more difficult. It slowly fell away and eventually stopped.

Grandma’s struggles with memory and orientation to space and place made it easier to stay home and Grandpa didn’t have a lot of time for socialising. Their friends were still there, they kept in touch by phone and letters, but rarely saw each other face to face.

My Grandparents’ story isn’t unique. Research is telling us that we are likely to spend our retirement either caring for a loved one or being cared for ourselves. Dementia is one of the key reasons people need care, and at the moment around half of all people with dementia in New Zealand are cared for at home.

Loneliness is increasingly being recognised as a major threat to our health. People caring for loved ones with dementia are likely to have an increased chance of experiencing loneliness.

With limited time and difficulty in making care arrangements, socialising can be tough. Caregivers are also often caring for someone they have a close relationship with, and it can be hard when this relationship changes, leaving caregivers feeling alone.

I’m researching the impact of loneliness on quality of life or caregivers to help us understand how we can support caregiver wellbeing – an incredibly important topic now, and in the future.

The link below will take you straight to the survey, which is anonymous and takes around 20 minutes to complete. Or you can send me an email, I’d love to hear from you.

Email: Brieonie.jenkins.1@uni.massey.ac.nz

Brieonie