June Andrews: policy support for dementia needs to be adequate

Technology can help people with dementia as long as governments provide the right framework to support people’s right and responsibilities

“Technology offers wonderful opportunities for people with dementia,” June Andrews tells Euroscientist, “because dementias are conditions where people can’t look after themselves as well as they used to.” She adds: “technological advances mean that some of the things that they used to be able to do can be taken over by machines.” According to the WHO, about 50 million people suffer from dementia worldwide today, with about 8 million new cases every year. As the director of the University of Stirling’s Dementia Services Development Centre, Andrews has been named as one of the top 100 most influential clinicians in the UK. And she is also one of the 50 most inspirational women in the UK National Health Service.

To people who are afraid that technology will be used to replace human contact, which is expensive, she has a sharp answer: “Using machines in the right place means that people can spend time doing things that only people can do: having a conversation, being supportive, give you a hug and listen to you.”

Inventors developing solutions to support people affected by dementia seem to think that memory loss is the main problem. But people with dementia “very rarely say that memory is their biggest problem,” explains this former nurse. “Quite often they say that their problems are the difficulties in judging things, in working things out and in doing the things they used to do.”

Innovators supporting such patients are also working on technology based on the internet of things. For instance, they help people in finding lost items, such as glasses or a wallet. “The business of being able to locate things that you have lost is something that every teenager or every busy working person would want as well as a person with dementia,” notes Andrews jokingly. “I’m always very excited by new technology, but sometimes I’m even more excited by the simple technology or the simple use of technology we already have,” she concludes.

The use of technology as part of the care of dementia patients also poses some worrying ethical dilemmas. “Deprivation of liberty is a serious issue,” Andrews points out. She adds: “People with dementia have things done to them, which are said to be done for their safety – ‘we lock the door so mother will not go to the road and be knocked down by a car,” she explains. “Sometimes people find that if I give you a locator to wear, it’s like tagging you as a criminal. Other people might think: it gives me freedom, because I can go everywhere I like and my family does not have to worry because they are going to be able to find me. In many cases, people with dementia say: oh well, she can’t agree, she is not in a position to make that decision for herself. The consent of the person is always very important,” she concludes.

Policy changes

People with dementia and their caretakers have rights and responsibilities in ensuring that dementia patients get access to suitable support. However, citizens don’t operate in a vacuum. The State has their own duty of care.

First, Andrews believes, governments are responsible for implementing policies to educate their citizens around this illness. Indeed, education is necessary so that people caring for patients with dementia take on the responsibility to recognise the stage of the disease to ensure best possible care. “It is important that families and individual know how to recognise when dementia is starting to be a problem for them,” she explains. And the reason is simple: early medication can slow down the inevitable decline that goes faster without adequate help.

Andrews also has strong views on how health policy changes can improve the situation of people with dementia. “The second really important policy decision that every country should make, is to make it clear to people to what extent the State is going to be able to assist you with your problem.” In many countries, like Scotland where she lives, if you are diagnosed with cancer you don’t have to pay anything. But if you are diagnosed with dementia, you might have to sell your house to pay for your care. “The State has to make it clear to people if they have to make financial provisions well in advance.”

Finally, the third aspect of policy change is linked to taking into account the perspective of women, who are key actors. “From research we have done recently, it’s quite clear – admittedly it is a small research, more research needs to be done – that men and women have quite different views about dementia,” she says. She believes that it would be very important that the state made sure that it wasn’t a group of men making the decisions: a male health minister, with men government officials, with male heads of advocacy organisations. Indeed, in her view, States have to be aware that dementia is a women’s issue: “more women are affected, more women are family carers, and more women are employed in the sometimes low-waged, low-esteemed jobs, which are the paid carer posts.”

Featured image credit: Falling Walls

Luca Tancredi Barone

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One thought on “June Andrews: policy support for dementia needs to be adequate”

  1. Thanks for this chance to talk about the issue.  As ever, i want to refine what was printed.  I don’t think the chief reason for early diagnosis is medication.  It is one reason, but NOT for those who have a dementia that will not be helped by medication.  However for every single person with dementia there are life style changes that will make their journey easier, and you are not likely to find out about them if you don’t know what is causing your problem. Diagnosis is the key to self help, family help and making the journey easier.
    Read more: http://www.euroscientist.com/june-andrews-policy-support-for-dementia-needs-to-be-adequate/#ixzz41mgPmh9v 
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