Since the first national strategy on dementia published in 2009, there has been a declared intention by the Government to improve diagnosis rates, encouraging people with memory difficulties to seek early referral for assessment. The rationale for speeding up the process is that the sooner a person has a confirmed diagnosis, the more time there is for families to adjust their lives and make plans; plus, appropriate treatments can be administered in a timely way and access to post-diagnosis information and support services can be triggered.
By the time the Prime Minister’s Challenge on Dementia 2020 was published in 2015 (David Cameron was Prime Minster at the time) improvement in dementia diagnosis was a key target:
Improved diagnosis rates: The Government set the first ever national ambition on dementia diagnosis that two-thirds of the estimated number of people with dementia should receive a diagnosis and appropriate post-diagnosis support by March 2015 so that they can access the right care at the right time. In 2010/11 in England less than half (42 per cent) of those estimated to have dementia were being diagnosed. The latest figures show this has risen by 17 percentage points to 59 per cent.
According to NHS Digital, the dementia diagnosis rate (for people aged 65+) in England, at the end of December 2018, was 68%, although this varies a lot in different regions of the country (76.4% in Greater Manchester compared with 58.8% in the South West).
So, the situation is improving: more people are coming forward for assessment and more people are receiving a diagnosis, as a proportion of the (estimated) total number of people who have dementia.
However, is early diagnosis always the right course of action for a person with early symptoms of (suspected) dementia? How do people feel about the experience of referral, assessment and diagnosis? Is the first appointment with the GP easier now that it was pre-2009? Is there less stigma? Is the assessment and diagnosis process handled compassionately by the professionals involved? Do people receive the helpful information in an appropriate time-frame? Is there enough post-diagnosis support?
These are some of the questions that we would like to explore in the Caregivers’ Club – and I am sure that you will have many more.
Last year I wrote a blog about my experience with my Dad of his referral to the Memory Assessment Service and how he fared with all the tests. He didn’t do very well, scoring 61/100 on the ACE III. His brain scan also revealed that he had had a series of small strokes, possibly over a period of some years. His memory is certainly below par, and he is shuffling rather than taking definite strides when he walks. However, in most things that he does in everyday life, he is functioning quite well. He is able to catch the local bus, which he does every day, visiting the supermarket to buy provisions for he and my Mum. Often, he buys food items in multiple quantities that are not actually needed, and he rarely follows instructions, but he gets there and returns home, and he seems to be managing his money alright. My Mum helps him with medication and she does his laundry and cooks (she always has, so nothing different there) and keeps watch on his personal hygiene. His quality of life is achieved by his continuing independence and his capability for enjoying the outdoors. He has a fabulous garden and is often to be found in one of his numerous sheds, making things out of wood. (No power tools are involved).
I was glad that the consultant old age psychiatrist who we saw for the diagnosis appointment took a wise view and diagnosed ‘Mild Cognitive Impairment with a developing dementia’: this was acceptable to my Dad, he wasn’t ready to be told that he had another condition to add to his heart and circulatory problems, hernia and hip pain.
Many people, however, are highly motivated to seek early assessment and a definite diagnosis. The uncertainty of ‘not knowing’ what is wrong can be hugely disabling and, in itself, lead to mental health issues and difficulties with family relationships.
Obtaining an accurate diagnosis for younger people (under 65) with dementia takes an average of four years – far longer than is ideal. Young onset dementia is often mis-diagnosed, partly because the early signs are less likely to be memory-related and are harder to spot. For example, a person with young onset dementia might have problems with decision-making and judgement, appear apathetic or irritable, or may (uncharacteristically) show a lack of empathy. Balance problems might be evident, or the person might experience distortions in their visual perception.
As with everything in life, ‘one size does not fit all’: some people have an appetite for knowing the full facts of a challenging situation, so that they can plan ahead and be prepared for the future, whilst others prefer not to know the ‘bad news’, opting instead to live each day as it comes, not worrying about a future they cannot know. Neither is right, we are all different, we all cope with adversity in our lives in different ways.
What we do know is that the prevalence of dementia, diagnosed or undiagnosed, is increasing. By 2021, the number of people in the UK with dementia will exceed 1 million (Alzheimer’s Research UK). It is imperative that, as a society, we become more accepting of people with dementia, and learn how to be compassionate, supportive and inclusive.
The Prime Minister’s Challenge on Dementia 2020 states, ‘We want a society where the public thinks and feels differently about dementia, where there is less fear, stigma and discrimination; and more understanding’.
No one would argue with this, but how near to achieving it are we in 2019?
The Unforgettable team would be interested to hear about your experience of assessment and diagnosis.