When you consider the experience of living with dementia, I think it’s fair to say that if you are a wealthy person living in a leafy, affluent, secure location your experience of life with dementia will be different to a person from a deprived inner-city area with no money (and possibly debt), living in unsuitable housing conditions in an area rife with crime. The basics of eating well, keeping warm and being able to get out and about when you are living in deprivation are likely to be challenging enough, before you even think about throwing dementia into the mix.
People from socio-economically deprived backgrounds are at increased risk of other health problems, both physical and mental, that may make them more susceptible to developing dementia (for example cardiovascular disease that could lead to vascular dementia), and are more likely to experience difficulties taking care of themselves, putting them at higher risk of infections, falls and problems associated with managing other conditions, for example diabetes.
They are also more likely to be diagnosed later when their dementia symptoms are more advanced, and often at a crisis point, most notably as a result of an emergency admission to hospital. This is due to lots of factors, but key ones are a lack of information about dementia symptoms and difficulty accessing services. People experiencing socio-economic deprivation are often more isolated than people from more affluent backgrounds, and may feel public services are judgmental rather than supportive towards them due to their circumstances.
Further down the line, there are also likely to be issues around accessing social care, for example homecare, which may mean a person struggles on at home alone for longer than they should, ending up reaching a crisis point as a result. To an extent this is true regardless of your circumstances, but it can be a particularly acute problem for people from deprived areas. If the person with dementia has a family carer, the carer is also likely to experience a far more difficult caring role due to lack of identification, information and support. Just accessing online resources, like this blog, won’t be possible if you can’t afford a device and an internet connection at home, or are unable to get to a library to use facilities there.
Out of sight, out of mind is often how socio-economically deprived people are seen by others and treated by society as a whole. Living with dementia is unexplainably tough for anyone, but much more difficult if you can’t see your GP when you need to, can’t access the wealth of information available online, don’t know how to and can’t afford to make your home environment more dementia-friendly (with signage, lighting and other assistive products), and can’t manage other health conditions, eat well and exercise your body, physically and mentally, to help yourself to live as well as possible with dementia.
Symptomatically, there are other important considerations too. Aside from the focus on memory problems so associated with dementia, one of the key issues a person with dementia can experience is a difficulty looking after their home and themselves. If your home is damp, poorly maintained and without adequate facilities to cook and wash, not having the cognitive ability to recognise this and take action can have significant health consequences, and could even result in death. Equally, living in a deprived area could put a person with dementia more at risk of crime if they are seen as a ‘soft target’ – another reason to want to hide away from others, pushing a person into an even more isolated life.
Taking all of these factors into account, the ramifications of socio-economic deprivation on a person with dementia are widespread and extremely serious . Yet these issues are largely ignored. Maybe this is because poverty is something that has always lurked in the shadows of society, or maybe it’s because there are just too many factors that need addressing when you consider how you might improve the life of a person with dementia who is living in deprivation – it’s not just about their health, it’s about their housing, access to services, financial situation and even their education.
For commentators, it’s easy to turn your back. A person who is newly diagnosed and living in a damp, cockroach infested high-rise, inner-city flat, without enough hot water for a shower or to clean their clothes, who lives on the breadline (or below it), just isn’t as attractive as interviewing a person with dementia who lives in a comfortable semi in suburbia, with nice home furnishings and family photos on the sideboard.
Yet poverty plus dementia puts the ‘Big D’ into a totally different focus. You are unlikely to be able to live well with dementia, and will probably die younger than a person of the same age with the same type of dementia who has a more affluent life. End of life care in deprived circumstances is also likely to be far removed from what anyone might call a ‘good death’.
Ultimately, you could claim that in these austere times such disadvantage is inevitable. Harsh critics might even argue if it really matters: after all, living with dementia can be unmentionably tough no matter what your circumstances. But when I look back over my dad’s 19 years with dementia, I know we had a better experience than many people precisely because of living in a more affluent and secure part of the UK, with our own personal resources as well as the education and ability to access care and support.
For all of that I am very grateful, but imagining us in deprived circumstances puts a whole new outlook on everything we went through. Austerity shouldn’t be a watchword for neglect. Nor should your living circumstances determine how dementia affects you. Equality for all is a nice catchphrase, but this is one of many areas in dementia care and support where it is sorely lacking.
Until next time…