What needs to be addressed in caring for people living with dementia?

Dementia is a progressive brain condition that affects memory, thinking, and daily life. Over 60 million people worldwide live with dementia, and the number is rising. In the UK alone, about a million people are affected. Dementia not only impacts those diagnosed but also deeply affects their family members and carers.

This study, undertaken by researchers at the University of Essex, aimed at understanding the financial costs that families of people living with dementia face, explored the emotional and psychological effects of dementia on both those diagnosed and their carers, and examined the physical health challenges experienced by carers.

Method and participants

Researchers used a qualitative approach, focusing on personal stories and experiences. Eight family carers, most of whom were partners, of people living with dementia, and four persons living with dementia, and one person who was both a carer and living with dementia, were interviewed. Their stories were analysed to identify themes and patterns in the responses.

Issues

Financial

Carers often faced significant financial strain. Many had to retire early or reduce their working hours to provide care, leading to a loss of income. Some even had to use their savings or mortgage their homes to cope. Additional costs included paying for respite care (temporary care to give carers a break), modifying homes for safety, and replacing household items lost or broken by the person with dementia.

Accessing government support was often confusing, and worries about future finances added to their distress. On the contrary, people living with dementia rarely spoke about financial distress.

Emotional

The emotional toll on carers was considerable. Many described a shift in their relationship from partner to carer, leading to loneliness and a sense of loss. Friends often drifted away after a dementia diagnosis, increasing isolation. Carers reported feelings of grief, frustration, and sometimes resentment as they watched their loved one’s personality change. The constant demands of care were found to be overwhelming, and some carers felt guilty when using respite care or feeling unhappy. Support groups, like community-led friendly cafes, provided some relief, but services were sometimes inconsistent due to funding issues.

People living with dementia also faced psychological challenges, such as denial of their diagnosis, loss of independence (especially when they had to stop driving), and frustration with memory loss.

Physical

Caring for someone with dementia was physically demanding. Carers often felt exhausted and sometimes had their own health problems, such as arthritis. They were occasionally required to lift the person after a fall or helping them in and out of cars. The physical strain increased as both the carer and the person with dementia aged. People with dementia experienced physical decline, memory loss, and sometimes other comorbidities.

Support

Carers struggled to find clear information about available support and benefits. Public spaces and services were not always dementia-friendly, making outings stressful. Communication from doctors can feel cold, as some expressed that they were communicated about their diagnosis without empathy, and lack of follow-ups after diagnosis made them feel lost.

Recommendations

The study recommends better training for carers, more accessible information, and more consistent support services. Public places should be adapted to be more welcoming for people with dementia, such as clearer signs and accessible toilets; airplane toilets are too small for a carer to assist, black doormats look like holes, loud music in the supermarkets and staff talking on headsets cause confusion. 

In a nutshell, dementia care affects every part of life for both those diagnosed and their carers. Addressing financial, emotional, and physical challenges together, and improving information and support, can help reduce the burden and improve quality of life for everyone involved.

There is an urgent need to enhance coordination between GPs, memory clinics, and community-led friendly cafes to disseminate information on financial support, offering counselling and peer support to carers to help them cope with loneliness and grief. Training should be made available to carers for safely lifting/supporting while handling falls, and dealing with challenging behaviour; ensuring that public spaces are more accessible for people living with dementia.

Funding acknowledgement

This study is funded by National Institute of Health and Care Research (NIHR) Applied Research Collaboration (ARC) East of England and Alzheimer’s Society. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.