Impact of Dementia on the wellbeing of informal caregivers

More than 55 million people globally are living with the condition, which results from a variety of diseases and affects memory, thinking and behaviour.

There are close to 10 million new cases diagnosed every year as the population ages, according to the World Health Organisation.

In Australia alone, there are an estimated 411,000 people living with dementia – a figure which is expected to increase to more than 800,000 people by 2058.

Dementia can have impacts on the quality of life for both those living with it and their family members, who often take on key caregiving roles.

Master of Public Health capstone project

As part of their capstone project, Master of Public Health students at Torrens University Australia have been looking closely at the evidence to determine the impact of dementia on informal caregivers across Asia.

Their work has been published in the journal Psych.

Their research found that the most common psychological impacts among caregivers were anxiety and mental health issues, and that carers in low- and middle-income countries are feeling the burden of care more than those in higher-income countries.

We spoke to student Millicent Raymond, a co-author of the study, who shared insights into what the research suggests about what carers need most.

The capstone project was the highlight of her time in the Master of Public Health. After discovering a passion for research into dementia and disability, Millicent is eager to embark on a PhD program.

How does dementia impact caregivers?

Dementia is a progressive syndrome characterised by a fast decline in cognitive function. This deterioration in cognition increases disability and dependency in the elderly and affects the ability to maintain the activities of daily living.

This will lead to the need for more physical, emotional, social and financial support from carers.

Depending on the level of the need of the person living with dementia, informal caregivers provide personal care duties, feeding assistance, attending medical appointments and carrying out medical directives.

Challenges faced by informal caregivers

In this study, we were able to elicit and evaluate the different challenges faced by informal caregivers in both rich and poor Asian countries.

The neuropsychiatric symptoms of dementia, such as agitation, anxiety and violence, cause more burden on the caregivers, which subsequently impacts their quality of life.

This is more evident in poorer countries, where caregivers often work long hours, struggle with money, have health problems, and feel less happy.

However, in wealthier Asian countries, efforts are being made to understand and support caregivers better, so the impact isn't as severe.

The financial impact on caregivers

As seen in the findings of this study, in poorer countries, in particular, informal caregivers of people living with dementia often work long hours and struggle with money due to reduced income and increased expenses while trying to balance life.

The impact of caregiving for a person with dementia have on a family

Families of a person living with dementia face problems like low levels of social life and support and impaired family functioning, which can lead to a reduced quality of life.

Long-term caregiving and constant utilisation of family resources pose a significant burden on the family income and can cause anxiety for the caregivers.

Findings on how to better support caregivers

Some scholars have highlighted the significant reduction of informal caregivers’ burden when appropriate support is provided. In this paper, we also identified some studies that have demonstrated how different tools have been used to identify various challenges faced by informal caregivers in different countries.

These tools, like the C.A.R.E tool (Caregiver’s Aspirations, Realities and Expectations), provide a good understanding of the burden that caregivers are experiencing and identify suitable support to assist them in caregiving.

The aged-care support that developed nations have, is also a great system that can significantly reduce informal caregivers' burden.

What do informal caregivers need most?

Formal support measures reduce the unmet needs of persons with dementia and improve caregiver satisfaction.

The use of our study by policymakers and health intervention designers will significantly help to address the burden caused by caring for patients with dementia.

However, resource-poor countries will require the support of wealthier countries to get this done.

This Master of Public Health Capstone project was supervised by Dr Fahad Hanna and completed by Aiza Amor Padre-e Abayon, Millicent Raymond, Priya Brahmbhatt and Shelina Samnani.