Dementia: A Little Help From Your Friends
Dementia seems to be a current hot topic, with celebrity endorsed advertisements on the television, the Prime Minister’s challenge, G8 summits on the issue and focus stories in the news, but it is not just a social issue for now, but also for the future.
Britain has an ageing population. There are currently 800,000 people with dementia in the UK with numbers set to rise to over 1 million by 2021. This will soar to 1.7 million by 2050. A shocking statistic to me is that one in three people over 65 will die with dementia. It is a terminal condition and there is no cure at present.
Dementia is an issue close to my heart on many levels. From a personal point of view, my beloved grandmother, who died 8 years ago this month, aged 87, lived the last few years of life with cancer and dementia. I cannot tell you which condition affected my grandma the most. Sadly, neither could she. She lost the ability to express herself and verbally communicate. I wish that there had been the spotlight on dementia then that there is now, and I wish that more people, myself included, had understood her needs. She received treatment and palliative care for her cancer. I don’t recall that any attention was paid to the dementia. Tellingly, the government invests eight times more in cancer research than it does in dementia research.
I recently met with a dementia support group, run by people who are living with dementia, for those who are living with dementia. This was an incredibly humbling experience that opened my eyes to something that I thought I knew about, but actually I had no idea. Listening to someone describe their self as shunned by society at large through no fault of their own, in the modern day, was utterly heart-breaking. The group explained that they felt patronised, misunderstood and outcast. I hoped that my grandma never felt that way, and hoped that I had never made her experience those feelings. I do know however that on reflection I did not necessarily help her enough or deal with her in the most appropriate way.
Fortunately, a lot is now being done to change the way that we as a population perceive dementia and deal with it on a day to day basis. A few months ago, I attended a couple Dementia Friend Information Sessions, which is an initiative being run by the Alzheimer’s Society, supported by Public Health England. A Dementia Friend learns a little bit more about what it’s like to live with dementia and then turns that understanding into action. The campaign’s objectives are to make the nation more aware of dementia and improve attitudes towards the disease, with the hope to create a more dementia-friendly society by encouraging one million people to become Dementia Friends. My chosen action was to train as a Dementia Friends Champion, meaning that I am now able to deliver the sessions myself.
I also got involved with my local Dementia Action Alliance in Kirklees. This was a newly formed group of various organisations in the area that all commit to make a difference within their organisation to try to become more dementia-friendly. They pledge to do this by taking various actions be it through raising awareness in their workforce, making their facilities and buildings more accessible to people living with dementia and helping their carers, or providing an enhanced or specialised service for those people to make them feel included and valued.
This year, Dementia Awareness Week ran from 18 to 24 May, with many events being run up and down the country to try and encourage the public to speak up if they had concerns about themselves or a loved one: not to bottle it up, as dementia can be difficult to talk about. People may feel scared, confused or even ashamed. People may also be hoping that the problem will go away so they don’t have to deal with it. Sadly there is still a lot of stigma attached to dementia and all of these campaigns and efforts are to try to get rid of those negative connotations and change society’s attitudes. I was privileged to help officially launch the Kirklees Dementia Action Alliance during that week and the hours of voluntary work I had spent all seemed worthwhile – that a large group of businesses and organisations all wanted to take positive steps to make a change.
I think that is where my professional interest comes in. I am a solicitor specialising in private client work. The majority of my clients are elderly and some have already been diagnosed with dementia, or are starting to have memory problems. These clients are just as entitled to put their personal affairs in order as any other client – in fact, it is these clients who should ensure that their personal affairs are in order at this time, before their capacity is lost and it is too late to sort things out. It is exactly the time that they should be ensuring that they receive all the state benefits that they are entitled to and undergo any relevant financial assessments, that their Will is up to date and that they have Lasting Powers of Attorney in place in case they do lose mental or physical capacity to deal with their own property and financial affairs or can no longer make their own decisions about their health and welfare.
Living with dementia does not automatically mean that the person does not have mental capacity to give instructions, and this is something I must assess in all my clients, without discrimination. Sadly, prejudice is something I think we are all guilty of to some extent however in my personal pledge as a Dementia Friend, I am trying to understand and appreciate that there is more to a person than the dementia. It is my job as a solicitor to take my client’s instructions and follow them in accordance with their wishes, and to be as helpful and supporting as I can throughout the process. Most legal documents are hard enough to understand as it is: jargon, lack of punctuation in Wills, valid execution of deeds. Whether my client has dementia or not should not really matter – I should be treating everyone with the same respect, without being patronising or making them feel stupid or small.
My attitude towards dementia has changed massively over the past twelve months, and it has affected my views on society as a whole and the way we all treat each other. Professionally, I hope it now makes me provide an improved service to my clients and makes a difference to their experience with a solicitor (we tend to get a bad press!). Ridley and Hall as a firm have also pledged their commitment to change by completing an action plan and signing up to the Dementia Action Alliance, so it is not just me but our staff as a whole who see this as a priority that needs to be addressed. Personally, I hope it makes me a better human being who is more understanding of others and their needs – particularly those with dementia – as statistically this issue will only become more prevalent throughout my lifetime. I also hope that if more people do become Dementia Friends, that the lives of the people I met at the support group and others like them can be improved as attitudes hopefully do change over time. People with dementia can take an active role in life and should not feel excluded or outcast.
I wish I’d have known all this ten years ago, so I could have made a difference in my grandma’s life when she needed me, but sadly I didn’t. All I can commit to is to trying to be more dementia friendly for the rest of my life – to my clients, loved ones and others who I don’t even know. I am optimistic that will start to change, and I sincerely hope that in the future, if I do become one of the statistics, that my solicitor, my neighbours and my grandchildren will all be Dementia Friends and help me get by.
Helen joined Ridley & Hall’s private client team in September 2013 and she is a full member of both the Society of Trust and Estate Practitioners and the Private Client Section of the Law Society. Having been born in Huddersfield, Helen lives in nearby Saddleworth and has worked at firms in Leeds and Bury since qualifying as a solicitor in 2006, specialising in Wills, estate administration, powers of attorney and inheritance tax planning.