The ‘worried well’

the worried well

Professor of Dementia Studies at Leeds Beckett University, Claire Surr, writes about how dementia is worrying the British public.

As an academic working in the field of applied dementia research, the fact that dementia is a topic on everyone’s lips brings with it mixed feelings.

On the one hand its position of prominence on the international political agenda means there is increased funding to conduct much needed research and a strong policy and quality agenda which should lead to better care and services for people with dementia and their families. On the other hand, increased public knowledge about dementia has led to it being the most feared condition within the British public as we hear this week that specialist memory assessment services are being swamped with what professionals are calling the ‘worried well’.

These are people who may forget where they have put their keys, or to attend an appointment, who then go to their GP concerned they have dementia. This has created an anomaly in the system where the government are pushing for increased diagnosis rates, with a target of 75% of people with dementia diagnosed by March this year (which it seems will be unlikely to be achieved), requiring GPs to refer more people complaining of memory difficulties for assessment and diagnosis.

Yet memory assessment services state they are unable to cope with the numbers attending, the majority of whom have nothing wrong with them. This ironically means those who do have dementia take longer to receive a diagnosis and thus to access potential treatment and support.

So what are the solutions to this? A simple solution would be for the NHS to put more money into increased memory assessment services to provide greater capacity within the system. However, this still means many people who do not have dementia would be attending specialist services when this wasn’t required. Patients can feel less comfortable with attending services in secondary care, particularly when they are often located within the local Mental Health Hospital, where attendance brings additional stigma to that associated with potentially having dementia.

Another option would be to train more GPs to conduct assessment and diagnosis within primary care or to offer this in conjunction with secondary care. This means people can be seen locally and potentially more quickly. There are already a number of successful models for primary care based memory assessment and diagnostic services across England.

However, there has been little published research on their effectiveness and cost effectiveness compared to traditional secondary care led services. This needs to be a research priority area if timely diagnosis is to be a reality for all.

Beyond the service issues of providing a timely diagnosis there is the complex area of post-diagnostic support. The more people who are diagnosed with dementia and at an earlier stage, the greater the number of people there will be in our society, who are living with the condition for a longer period of time. Many people with dementia and their families report feeling abandoned after diagnosis; told there is nothing that can be done but to monitor them.

Accessing support and services post-diagnosis can be like trying to navigate a complex maze of different services spread across health and social care and the voluntary and private sectors. New posts such as ‘dementia navigators’ have been created and piloted, to try and help people make their way through this complex process. However, access to a dementia navigator may not be available in every locality and is usually via self or health professional referral, rather than being an automatic provision for all.
The national picture of post-diagnostic support is complex and varied with very different services available in different parts of the country and even in different localities within one county. Therefore, in order to provide effective and streamlined diagnostic and post-diagnostic support for people with dementia and their families, a knowledgeable and skilled health and social care workforce is required.

What is clear from research, policy and anecdotal evidence from practice, is that the current health and social care workforce is largely not equipped with the knowledge it needs about dementia or local services and support. There is a huge programme of work underway between organisations such as Health Education England, Skills for Health and Skills for Care in developing curricula and knowledge and skills frameworks for dementia education and training, for this workforce. This will ensure that eventually all staff have at least a minimum baseline knowledge about dementia and how to support people with the condition.

What is unclear is how this workforce will stay up to date with what is set to become a rapidly changing field in terms of service provision and types of support available. The greater integration of health and social care under the Health and Social Care Act will be likely to mean changes to the way services are commissioned and delivered.

Austerity measures across health and social care will inevitably mean changes and cuts, while increased research activity will provide new treatments and evidence about best practice. In an ever fluid environment, in which health and social care staff are likely to struggle to keep track of what services and support are available locally for people with dementia, what chance do people with the condition themselves and their families have?

In this time of great development and change in the field we must not forget the importance of the individual needs of each person with dementia and those of their family, because to do so will mean we have lost sight of the most important perspective of all.

Read about Claire’s work

Image: Dollar Photo Club

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