Interlacing the stories of those caring for loved ones with Alzheimer’s disease is a research project that has strong personal significance for University of the Sunshine Coast PhD student and clinical counsellor Judy Boyland.

Mrs Boyland, who cared for her father for more than five years after his diagnosis with the disease, is keen to highlight the challenges faced by carers by providing them with an opportunity to discuss their experiences.

“I’m conducting in-depth interviews with those who are caring for loved ones with the progressive disempowerment that accompanies the cognitive and physical degeneration and loss of function caused by Alzheimer’s,” she said.

“My research will help form a narrative landscape, weaving together the many voices of a lived experience.”

Mrs Boyland – who lists spinning and weaving among her hobbies – has interviewed 20 carers as part of the qualitative study, with participants ranging in age from 19 to 95. She said there was no typical caregiver for a person with Alzheimer’s.

“I have interviewed male and female caregivers who are caring for parents, grandparents, partners, spouses, in-laws, and members of blended families,” she said. “The duration of care has ranged from onset to end-of-life, and the time span of caregiving has ranged from a couple of years to 15 years.

“Some participants have never spoken before about their experiences and they have expressed gratitude in just being able to tell their story to someone who understands what it can be like – the good times, the awful times and the scary times.”

Mrs Boyland said a diagnosis of Alzheimer’s was life-changing for both the patients and their caregivers.

“What a lot of the participants are expressing is a feeling of isolation and a breakdown in relationships with people they once thought were friends,” she said.

“Many friends, and even family, can’t deal with the changes in behaviour of the person with Alzheimer’s, particularly when that behaviour might become abusive, appears silly or is embarrassing.

“These could include not remembering the names of friends and family, or even not remembering a comment they’ve just made and repeating it over and over.

“Relationships between the carer and the patient can change and we sometimes see role reversals. There can also be a sense that the person receiving care is no longer the person that was loved: the person once loved has been replaced with a stranger.

“There can also be impacts on emotional and physical health, especially in relation to changed sleeping patterns. When a patient is at an advanced stage of the disease, there may be restlessness as evening approaches and also throughout the night.” 

Mrs Boyland said carers also were required to be ever vigilant about their loved ones overmedicating, forgetting to turn off irons or hotplates, falling, having incontinence or wandering off.

The researcher said she believed her experience of caring for her father enabled her to bring sensitivity, empathy and respect to participants and to the stories they have shared.

Mrs Boyland is a former teacher who has a private counselling practice at Springwood, south of Brisbane. Her PhD supervisors are USC academics Dr Ann Moir-Bussy, Dr Peter Innes, Associate Professor Mathew Summers and Dr Mark Pearson.

— Gen Kennedy