Dr Les Rudd is the Mental Health Service Improvement lead for 1000 Lives Improvement, part of Public Health Wales.
Is there something wrong with me? Do I have a disease? I’d want to know, wouldn’t you? I want my doctor to find out what it is and what I can do about it. And the earlier I am told, the better. Knowledge is power, right?
So why, in Wales especially, do we have a problem identifying and diagnosing a dementia?
We know from the Alzheimer’s Society ‘Mapping the Dementia Gap 2013’ report that dementia diagnosis rates in Wales were just 39%, compared with 48% in England, 63% in Northern Ireland and higher still in Scotland. This could mean that a lot of people living with dementia in Wales do not have a diagnosis.
We know dementia is progressive, which means it will gradually get worse, which is why an early diagnosis is good to have. This will allow you to get your affairs in order, put help in place and plan for the future, because with the right support and assistance it is possible to live well with dementia. With neurological diseases, like Parkinson’s, we understand the importance of knowing and knowing early, so why is it different with dementia?
Improving rates of identification and diagnosis in Wales
We are doing the obvious things to change this in Wales – to improve rates of identification and diagnosis. These include a really good interactive DVD training package for General Practices. Also there is the development of Welsh language versions of the key assessment and screening tools for dementia and other cognitive impairment – like the GP-Cog, a national audit of Memory Clinics in Wales, which shows that part of the problem is the considerable variation of the services offered and the capacity to deliver them in different localities.
There is also 1000 Lives Improvement, our programme for improving dementia care, which includes a target for Memory Assessment Services to reduce the time between onset of symptoms of dementia and the diagnosis being communicated from the doctor to the patient.
Denial and dementia
This is all important work, but we are not going far or fast enough, not in my book anyway. It makes me wonder if the main problem is one of denial? One of the first things I often hear is people in denial that the problem could be dementia at all. Sure, denial can be a good way of coping sometimes. And denial is understandable given the fear and social stigma associated with dementia – like cancer used to be.
Maybe we should run a national education campaign to counter denial and promote help seeking behaviour? Not just raising dementia ‘awareness’, but to prompt action on ‘How to get your loved one to the doctor if they are in denial’. If it worked well and more people went to their doctor, then I am confident our primary care doctors will respond positively.
We all know the benefit of a dementia diagnosis and so would onward referral to Memory Clinics for specialist assessment and diagnostic staging be equally as positive?
Our national audit of Memory Clinics in Wales shows that these are often very small ‘clinics’ – sometimes just a consultant working solo in their outpatient clinic. An increased service demand for memory assessment and diagnosis threatens to reduce the resource and capacity of the Memory Clinics to provide post-diagnostic support, and without such support, we are in danger of heading back to denial. What is the point of giving a dementia diagnosis if the support services are not there?
One thing I am clear about, and maybe I’m in the minority, is that I would want to know my dementia diagnosis and know it early, when I could still argue for the support needed to live well with dementia.
We would love to hear your thoughts in the comments section below.