New findings highlight the importance of understanding experiences of older people living with dementia

Dementia is estimated to affect 50 million people across the world. It is also predicted to double every 20 years. People with dementia often need care to ensure their needs are met.

To improve care, researchers studied older people with dementia living at home. They found that people with dementia valued formal caregivers who showed authentic emotional care for them. Findings also suggest that formal care services can lack understanding and connection to people with dementia in their everyday lives. It also found that informal carers, for example family and friends, often provide more appropriate care. This is because they better understand the person’s needs and how to meet them.

This research could offer insights for formal care services and informal carers. It also offers ways to prevent avoidable hospital admissions, improve care delivery, and reduce care costs.

Dr Linda Nicholson, Former PhD student at the School of Health Sciences University of Dundee, highlights the importance of understanding the experiences of older people living with dementia at home.

Can you tell me more about the study?

“This study explored the lived experience of care for older people with dementia living at home in Scotland. An aim was to understand how far care for people with dementia was person-centred in meeting their needs.

“The findings showed there were 2 main themes about older people with dementia’s experience of care. Becoming a person with dementia; and being a person with dementia.”

Why is it important to include lived experiences of people living with dementia? How will you use this data?

“The global rise, and the increasing number of people living with dementia places a burden on health and social care services. In the mild to moderate stages of dementia, caring for older people with dementia falls largely on informal carers. They may or may not be equipped to support the care of that individual.

“By including the lived experience of people living with dementia in research, their voices can be heard. The information found can understand their needs and personalise care for them. The information provided can better tailor care to their needs. Understanding older people with dementia’s lived experience of care may also help them to remain living at home longer. It could also reduce unnecessary hospital admissions and reduce the cost of caring.

“It is hoped that the data will inform care practices. That could improve the quality of care for older people with dementia living at home, while reducing costs.”

What are you hoping to achieve from this study?

“The aim was to explore older people with dementia’s experiences of care, from their perspective. By hearing their stories first, it has challenged assumptions about people with dementia’s ability to take part in research. It also showed that they can make decisions about their care.

“The research also highlighted what factors contribute to good care for people with dementia. These factors include caregiver qualities, meaningful interactions, supportive environments, and family dynamics. People with dementia described these as supportive, dignifying, and comforting.”

How has Join Dementia Research helped support your study?

“Without Join Dementia Research, I would not have been able to complete this study. I had planned to conduct the interviews face-to-face across different health and social care settings. But, due to the restrictions of the pandemic, it meant I was no longer able to use this method.”

What would you say to other researchers about using Join Dementia Research?

“This is an excellent service for anyone planning on carrying out research with people who have dementia or their representatives. Many of my research colleagues have used this resource. For many, it was often the main platform used to identify potential participants. The staff are proactive and supportive. Without their help, I would not have been able to set up the study on Join Dementia Research.”