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Practice comment

Patients with dementia deserve better diagnosis and treatment


With NICE reconsidering treatments available to patients with dementia, nurses have the chance to improve their clinical practice and awareness of the condition, says Linda Nazarko

It would take a city the size of Leeds to accommodate the 700,000 UK citizens who have dementia. Most will never be formally diagnosed because we have a shamefully poor record on recognising and detecting the condition. 

The term dementia is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities. Diseases such as Alzheimer’s disease cause structural and chemical changes in the brain that lead to dementia symptoms.

Dementia is a terminal disease. If most people who had a terminal disease such as cancer remained undiagnosed, there would be an outcry.  Diagnosis of dementia matters.  It informs treatment. In the absence of a diagnosis an individual can be inappropriately treated. This is because professionals do not know what is wrong and what care is appropriate. So the person with dementia is deprived of the opportunity to make decisions about treatment and care.  

People with dementia in the UK are diagnosed later than those in most European countries because they have very limited access to drugs to help slow the progress of the condition.  Two types of drugs are currently available.  Acetylcholinesterase inhibitors can help with mild to moderate Alzheimer’s.  Memantine, an NMDA-receptor antagonist, can help in moderate-to-severe Alzheimer’s.  Current guidance from the National Institute for Health and Clinical Excellence (NICE) recommends that cholinesterase inhibitors are only prescribed to people with moderate dementia and Memantine should only be used in clinical trials and not in clinical practice.

Now NICE is reconsidering its position and is likely to make cholinesterase inhibiters available in early dementia and memantine in advanced dementia. This is good news both for those with the condition, their families and clinicians.  It means that nurses and other healthcare professionals need to improve the diagnosis, care and treatment of people with dementia. 

We need to improve awareness of dementia, our ability to diagnose and our clinical practice.  Increased awareness and earlier diagnosis help slow deterioration and improve quality of life. Diagnosis enables staff to work with the person and his or her family, ascertain wishes and plan care.  This could end the tragedy of late diagnosis and enable us to involve the person with dementia in care. 

Dementia symptoms affect a person’s ability to interpret and perceive the world and to communicate with others. The world can be a very frightening place to people with dementia because they often struggle to interpret what is happening.  They can develop symptoms such as apathy, agitation, depression and anxiety, hallucinations and delusions.  These distressing symptoms affect the person’s quality of life and make it difficult for care givers to provide care.

Most - around 90 per cent -of people with dementia develop neuropsychiatric symptoms at some time. Around 60 per cent develop behaviours that may be considered challenging. Often people with neuropsychiatric symptoms are prescribed a class of drugs known as anti-psychotics or neuroleptics. In the absence of alternatives 180,000 people a year are prescribed these medicines.  They can worsen dementia, decrease quality of life and double the risk of death and newer drugs are no more effective than placebos.

Increased availability of dementia drugs can reduce the incidence of behavioural problems because they help people with dementia to understand and respond appropriately.  These drugs combined with new and flexible multidisciplinary approaches to care can improve quality of life.

Improving access to dementia treatments will make a real difference to the lives of some people with the condition, but there is much more to be done. The drugs only help a small proportion of people with dementia and only for a limited time.

What is needed are more effective drug treatments. And, given that the number of people with the condition is set to double in the next 30 years, we also need a massive campaign aimed at reducing the risks of dementia.

Linda Nazarko OBE, MSc, PGDip, BSc, RN, FRCN, is a research fellow at London South Bank University, a lecturer at King’s College (visiting) and a nurse consultant for Ealing and Harrow Provider Services


Readers' comments (3)

  • my concern is not so much around the use of drugs but around the follow up required after these drugs are perscribed, GP's are extremely poor in my view in evaluating Dementia drugs effectivness. Doses and the type of drugs perscribed may need to be ajusted. Community mental health teams are stretched to breaking point and do not have the skilled man power to help support those on these drugs out in the community. Lets hope more Admiral nurses are employed to help support carers who will be dealing with difficult behaviours of their loved one.

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  • Naomi Feil Validation Training for nurses and carers seems to be a successful and beneficial programme for patients suffering from dementia.

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  • All nurses may come accross dementia at some time in their career, as well as in the community or in their social environment. Training for undergraduate nurses in the care of patients with dementia must be mandatory with an option for further postgrad. training to match the needs of their area of work and the number and dependency of the patients they encounter.

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