Dementia friendly communities – are we doing enough?
There are many initiatives with the aim, or indeed mission, to raise dementia awareness. This can only be good, but is it enough?
If we are to create truly dementia friendly communities, we need to ensure that everyone is aware of the condition, its causes, and the effects on the people living with it. We need to look at the way we and society in general categorises dementia. Is it a disease? Definitely not! It may be caused by underlying diseases, but dementia itself is a condition, not a disease.
There are many reasons why people develop dementia, some are known, yet the not all the underlying causes are fully understood. Alzheimer’s is the most common, closely followed by vascular dementia, along with Lewy Body and Pick’s. There are over a hundred known causes of dementia, and probably yet more to be discovered. Parkinson’s disease and Huntingdon’s disease can also result in dementia, as can CJD and HIV/AIDS.
Dementia is not a condition limited to the elderly, there are over 17,000 people in the UK, under the age of 65, who have dementia. At some point in our lives, dementia will affect, directly or indirectly, every one of us.
There are different ways of creating dementia friendly communities, along with different ways of helping those with dementia, live a full and normal life. Below are just two examples of possible solutions being used in the UK and Holland. Both have been in the news recently, and both have attracted criticism.
In Holland, in Weesp near Amsterdam, they’ve created what has become known as a “Dementia Village” called Hogeway. As far as the residents are concerned, it is a “normal” community with “normal” facilities. Yet, the shopkeepers and hairdressers etc. are actually carers, watching over them, and monitoring their every move. Residents are free roam around the grounds of the facility, yet they are not free to go beyond its confines, unaccompanied.
Whilst this approach may well be progressive, in that it provides security, and a perceived level of normality - it is still, in effect, an institution, harking back to darker times. Residents are not free to move around the wider community, they are confined within a safe, yet regulated, institution. They are presented with a “Truman Show” type of environment, where everything is not quite as it seems.
This “head in the sand” approach, is safe, and yes the residents are well cared for. Is this the right approach? Should we "lock" people with dementia away, in a little world, that may seem normal, but isolates them from every day life?
A completely different approach is being introduced where I live in West Sussex, UK. Sussex Police have obtained a number of tracking devices, linked into a service already used by West Sussex County Council. These devices are issued to people with dementia, who have a propensity to wander, on a regular basis. In some quarters, this has caused an outcry, with the opponents referring to the system as “tagging”, and a means of saving Police time and money.
Tagging it certainly isn’t! Users are still free to engage with their local community, but, if they become confused and lost, whilst out and about, they are easily found. This helps provide security and reassurance, both for the person with dementia, and for their families, helping to prevent some of the more serious incidents, where a person with dementia has wandered, become lost and confused, and tragically died, before they have been found!
Dementia is still misunderstood by much of society. Awareness is lacking, and there are still too few of us able to spread the word. We need help.
We need to mobilise the power of the media. Yes, films have been made about Iris Murdoch, and Margaret Thatcher. But, these are mainstream personalities, they are not your average Joe. Many soaps now focus on social and medical issues, but very few have the courage to handle the issue of dementia.
Whilst many on social media are doing a sterling job of raising the issue of dementia awareness, mainstream media covers little. Dementia is the silent, invisible condition, whose name must not be mentioned.
We need more TV programmes to take on board the issues of dementia. Soaps, whilst willing to challenge other medical issues, rarely touch on the issue of dementia. Documentaries are quite happy to deal with obesity, plastic surgery and a variety of psychological disorders, yet dementia is not a subject regularly aired.
We need to lobby our TV and radio stations, and encourage them to cover the subject of dementia. Let's spread the word!
As we continue to achieve greater longevity, we need to encourage a much better understanding and awareness about dementia, how it affects the lives of those with it, and the effect it has on friends and family.
In the UK, funding for dementia research represents just 6% of the resources available. Cancer, by comparison, receives 71%, and heart disease, 20%. Dementia costs the UK economy twice as much as cancer, so a clear imbalance exists, and will continue to do so, for as long as our populations continue to grow older, and live longer.
Dementia research is severely under-funded. Cancer research, as a high profile cause, is able to reach out through advertising, as is heart disease, yet dementia receives little exposure. Animal charities are able to command greater TV commercial air-time, than those charities supporting dementia research.
Until we can sweep aside the stigma associated with dementia, increase awareness, and provide greater funding into research, for either a cure, or at the very least, a significant means to slow its progress. We can never create a truly dementia friendly society, or community.