People with dementia facing new challenges

A study exploring how increased digitalisation since the COVID-19 pandemic has impacted finance management for people with dementia and their carers is published today.

Researchers from the University of Liverpool surveyed people with dementia and unpaid carers living in the UK for the study, published in the journal Dementia.

Dr Clarissa Giebel, Senior Research Fellow & Older Adult Subtheme Lead ARC NWC, said: “People with dementia are facing increased digitalisation when managing their finances – from paying with a debit card in shops to direct debits and managing money online. Research into how people with dementia experience this growing digital interface is limited, so our qualitative study aimed to explore how the pandemic has affected finance management skills in dementia and its impact on unpaid carers.”

The research showed that managing finances has been both simplified and made more complicated by digitalising how money is spent and managed. From their interviews with study participants, researchers identified five themes:

The potential dangers of losing finance management skills early on
Some carers retrospectively reported their relative starting to lose the ability to manage finances prior to their dementia diagnosis. Losing this ability without a diagnosis in place can be dangerous for the person with dementia and their relatives linked by, for example, a joint bank account. The researchers note that it is important for carers to be linked into online finance management, to supervise and reassure but also enable the person with dementia to continue engaging in finances as much as they can.

Face-to-face shopping
Despite some negative experiences, most carers and people living with dementia felt that in-person shopping enhanced their social life and helped to maintain established routines and independence for longer. While some people with dementia and carers who felt particularly vulnerable due to other health conditions reported that they would continue shopping online after the restrictions were lifted, many said they would return to in-person shopping as soon as the rules were relaxed.

Moving to digital
Some considered using a debit card advantageous as the need for remembering and understanding monetary values can be overcome easily, aided by the limit for contactless transactions being raised to £100. People living with dementia who were particularly vulnerable due to multiple health conditions felt that it was safer for them to use a contactless card than to handle cash. Direct debits are also helpful for carers, as it removes an additional layer of financial administration.

Carers were keen to support those living with dementia with online shopping as they felt this would help to maintain independence. However, many older adults with the condition and older carers were not skilled in using digital platforms for shopping or banking, leading to anxiety. Thus, in some instances, younger carers supported both the person living with dementia and their older carer with these digital tasks. In some instances, carers had to stop their relative with dementia from using their debit card or bank account to avoid unwise financial investments.

Fast-tracked digitalisation due to COVID-19
Participants highlighted how COVID-19 restrictions fast-tracked a move towards digitalisation. Many people with dementia were vulnerable, although not all received priority status due to their dementia diagnosis – resulting in a reliance on digital platforms to buy shopping or handle money. Many reported not being able to buy their usual brands, access cheaper products and shop for bargains, meaning higher shopping bills.

For some living with dementia, engaging in online shopping and banking presented few difficulties as it was something they had done prior to lockdown. For particularly vulnerable people, being able to shop and manage finances online was considered safer.

Impact on carers
Supporting relatives with various finance management tasks has had a severe impact on many unpaid carers – and become a major additional caring task alongside meal preparation, accompanying the person outside the home, and personal care. While some support was available to most carers, in particular from Admiral Nurses and some dementia charities, no or very little support with taking on financial management tasks was offered by banks, utility companies or any other statutory organisations.

Dr Clarissa Giebel, Senior Research Fellow & Older Adult Subtheme Lead ARC NWC said: “Carers need to be supported in managing their relative’s finances from a practical point of view, as well as being supported with their general mental health and well-being due to taking on additional caring duties. Digital systems for finance management need to be user-friendly for people with cognitive impairment, with a need for digital literacy training for middle-aged and older adults to avoid difficulties if they should develop dementia.”

Unpaid dementia carer and public adviser Kath Halpin said: “It is my lived experience that when someone is having problems handling money and paying bills that this is an early indication of dementia. As a carer for my parents, who both lived with dementia, it would have been of great benefit to me personally if information relevant to financial management had been more widely and easily available.

“I cannot stress enough how important it is in my view that the recommendations are taken up and implemented. I firmly believe that the benefits will be immense if the right information, education and support, around financial management, becomes more readily available to those facing the challenges of dementia care and living with dementia. I hope that this study will help others who find themselves in the same situation as I did.”

This study was funded by the Standard Life Foundation. This is also independent research funded by the National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC).