Chapter 4
Early Intervention for Dementia
Introduction
Society’s views of dementia are changing and with this the expectations and wishes of our patients are changing too, challenging clinicians and services to adapt. A large proportion of people experiencing the early signs of dementia are now wishing to know if they are developing the condition. Previously, the prevailing view in society was to refrain from discussing dementia – a view shared by most clinicians. A self-perpetuating cycle emerged. Lack of training on dementia for health professionals led to the sense that dementia was not a health care priority, resulting in little recognition of the clinical needs of patients. Two common beliefs have led to the illusion that doing nothing is best.
- People developing dementia are unaware of their impairments and are happy in their ignorance.
- There is nothing that can be done if a diagnosis is made early, as dementia is an incurable condition.
Anyone who has spent time with those developing dementia will know that the first of these is simply untrue. The majority of those with early dementia are only too aware of the changes that are taking place, as are their families. This painful realisation leads to the psychological defense of denial, rather than an organic lack of awareness.
There is now a steady demand from those with early changes in memory and other mental skills for an early assessment and diagnosis. This leads to the second point; what can be done to help those diagnosed early?
Exploring the concept of early intervention in dementia
What is ‘early intervention’?
The concept of early intervention started in services for young people, where providing a comprehensive intervention early in development aimed to support a more adaptive future. In mental health, this concept has developed mostly as early intervention for psychosis. Here, supporting an early diagnosis with appropriate treatment, advice and family support can help a person who is developing mental illness maintain the direction of their life, stay in education or employment and maintain important relationships with family and friends. An important part of the concept is that although early intervention may include medical treatment, it is much more than this and consists of using a broad range of psychosocial interventions to help support that person to live well.
The ‘Memory Clinic’
As demand for early diagnosis for dementia started to grow, partly driven by the launch of acetylcholinesterase inhibitor therapy, the common service response was the ‘Memory Clinic’. There are many different models, all with the same focus – to provide a technically expert diagnosis, sometimes by a multidisciplinary team, then medical treatment if appropriate.
While this model may provide an early diagnosis, patients sometimes report feeling unprepared for the assessment process, with consent sometimes assumed, and a lack of support after the assessment highlighted – after the diagnosis was made, what then? Should the patient be told? Should the relatives be told this confidential information? And in the words of Terry Pratchett, ‘After a diagnosis people need to be shown the path, not shown the door’.
Early intervention in dementia
The principal aim of early intervention in dementia is to help those affected by early dementia live as well as possible, both now and into the future. An important consequence of this broad definition is that ‘intervention’ is not something done to people after the diagnosis. Rather it is the combined impact of contact with services, before, during and after the assessment process.
Another consequence is that ‘those affected by early dementia’ may include those experiencing the condition and those closest to them. Experience has shown that separating the needs of ‘patients’ and ‘carers’ at this point is unhelpful and a distinction that a husband and wife, or mother supported by her children, would not recognise. The Early intervention Service for Dementia in Croydon broke new ground in developing the service model and providing evidence for its effectiveness.
Here, the Early intervention Dementia Service in Worcestershire is described as an example.
The name of the service: mentioning the ‘D’ word
The Early Intervention Dementia Service in Worcestershire was developed following wide consultation with people with dementia, their families, and partner organisations such as the Alzheimer’s Society. An important principle was to help people use the word ‘dementia’ without being overwhelmed by it. The comparison with the changing use of the word ‘cancer’ was a frequently quoted example. This view could be summarised in the comment made by one person living with dementia;
How do you expect us to feel comfortable talking about dementia if you can’t?
The choice to openly title the service a ‘dementia’ service came from this, and consequently starts the patient on the long path of adjustment, starting from the point of referral.
The pathway through the Early Intervention Dementia Service is summarised in Box 4.1:
A word on consent
Investigating possible dementia is similar to other areas of medicine. It has the potential to be of great value, but needs to be undertaken either with a patient’s consent, or if unable to consent, carried out in that person’s best interests – with skill, with proper after care and, above all, with a clear intent to be of help to the patient.
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