Is there really a benefit from getting an early dementia diagnosis?

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Tim Gomersall, University of Huddersfield

The Alzheimer’s Society recently issued a call for people with symptoms such as memory loss and confusion to seek early medical help. The British charity is worried that people may be putting off getting a dementia diagnosis and not receiving the health care and support they need. As the Alzheimer’s Society’s recent blog post put it: “A lack of diagnosis is denying many people with dementia the chance of getting the best possible treatment, information and support – evidence shows the earlier on you receive these, the better your chance of living well for longer.” But is early diagnosis always a good thing?

Early diagnosis has also been a key policy aim for government. We can see this in the National Dementia Strategy, and David Cameron’s Challenge on Dementia. A few years ago, the NHS even trialled a scheme to pay GPs £55 for each dementia diagnosis made. This move was widely condemned by doctors’ groups and quietly dropped after six months. In any event, the push for earlier diagnosis continues. So what exactly are the benefits of earlier diagnosis? And who are the beneficiaries?

What works?

There are no known treatments to prevent or reverse dementia, although drugs called memantine and acetylcholinesterase inhibitors can help to relieve symptoms .

In the course of my recent fieldwork, however, I met some people with memory loss who invested hope in these treatments beyond what was possible. They believed that getting onto anticholinesterase inhibitors as soon as possible could delay further decline.

Drugs can help with symptoms.
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One of the most difficult experiences in my recent research was meeting a woman who felt she had been denied treatment by the doctors, and asked me and my colleague if we were able to prescribe them for her. We had to explain that we were not clinically qualified, and in any case, the drugs would not prevent the progression of dementia. But false hope can translate into big profits for drugs companies.

The anticholinesterase inhibitor market had an estimated value of US$4.2 billion globally in 2011, with this figure set to increase over coming years as people live longer. One recent market analysis identified early diagnosis as “a challenge [that] will affect the growth of the market over the 2013-2023 forecast period”.

Thankfully, drug treatment is not the only option for people with dementia. Anyone with suspected dementia can access a memory clinic on the NHS to seek practical support for their needs. Memory clinics typically include a range of health professionals – including occupational therapists, psychologists, specialist nurses and psychiatrists. These multidisciplinary teams can help with emotional and occupational support. They can also offer advice on adapting homes – for instance, by providing memory aids, grab rails for bathing and toileting, and extra lighting.

The National Institute for Health and Care Excellence (NICE) also recommends “group cognitive stimulation programmes”. Cognitive stimulation uses enjoyable activities to engage thinking and memory – for example, musical activities, reminiscence sessions, and games. A recent review suggests this approach could help to maintain cognitive abilities, particularly memory and communication.

However, the current evidence relies on a number of small trials of often quite different activities, going back to 1979. Nevertheless, in the absence of effective drug treatments, cognitive stimulation is important for many people with dementia, and continues to attract research and practice interest.

Finally, we shouldn’t underestimate the psychological importance of receiving a diagnosis. Overall, the evidence shows a mixed picture. On the one hand, people are glad to understand the cause of their symptoms, to be able to plan for the future, and access resources such as dementia support groups. However, people often worry about the stigma of dementia, and some want to avoid the emotional impact of the diagnosis.

Is earlier better?

Over the last couple of years, I’ve been involved in a project looking at people’s experiences of mild cognitive impairment. This syndrome is defined as a “boundary state” between cognitive ageing (a normal process) and dementia.

If the Alzheimer’s Society’s suggestion that dementia is being under-diagnosed holds, then people with mild cognitive impairment are an anomaly. They have sought medical advice for possible dementia symptoms which are not severe enough for a diagnosis. Might it be that more people are already seeking help earlier, as the Alzheimer’s Society hopes? It seems plausible.

After the National Dementia Strategy was launched, there was a 12% increase in dementia diagnosis rates in the UK between 2009 and 2011, and recent studies show a continued upward trend.

So, who benefits from early diagnosis? As suggested above, a number of commercial and charitable organisations stand to gain substantially. There are also some benefits that may accrue to people with dementia from an early diagnosis in terms of symptom control and cognitive stimulation. Though any potential gains are small, these can still be meaningful to the person.

The other side of this, however, is the risk of over-diagnosis and increased public health anxiety associated with such “public awareness” campaigns. For example, our recent review of mild cognitive impairment research suggests people with this diagnosis live with significant uncertainty about the cause of their problems.

These patients often continue to worry about possible dementia, and the infrastructure for supporting them is patchy at best. The ethics of diagnosing people who may have no underlying illness has also been questioned. So yes, we should be helping people with dementia to get the support they need as soon as possible. But this shouldn’t come at the cost of over-diagnosing and over-medicating people.The Conversation

Tim Gomersall, Senior Lecturer in Psychology, University of Huddersfield

This article was originally published on The Conversation. Read the original article.

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Individuality & Person Centred Care in Asia

Since a fortnight ago this tweet have been shared over 29,000 times and 21,720. Tweeted by Harudajin, he shares an unforgettable experience in his youth in primary school when his teacher shared with his students the meaning of individuality.

The teacher explained that when an instruction is provided to have the class write the word 晴, then everyone in  the class will write the word 晴. However, the result of the word 晴 will differ slightly from each student. However if given an instruction to write the word 晴 and the student wrote the word 雨, that is not viewed as individuality.

Below is the original tweet:

There is a lot of discussion about a social culture in Asia and the differences between the cultures between the East and the West. Individuality in this discussion is working together as a social being, but at the same time appreciating and accepting the differences that we exhibit as individuals. No two handwriting can be exactly the same and despite our very similar daily routine and habits, it’s the small intricacies and preferences that make us all different. Here the teacher explains that we don’t have to radically stand out to be different, we can all be different and still maintain a sense of cohesion and harmony without our culture.

No two handwriting can be exactly the same. Despite our very similar daily routine and habits, it’s the small intricacies and preferences that make us all different. Here the teacher explains that we don’t have to radically stand out to be different, we can all be different and still maintain a sense of cohesion and harmony without our culture, and that’s what individuality is all about.

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For Asians, harmony and cohesion are important factors and at times residents, and patients may not voice out our needs as they may not wish to inconvenience their carers and caregivers.

At a talk a few months ago about the Fukushima earthquakes, it was said that older adults that sought shelter in a gymnasium developed incontinence issues and muscle atrophy. Afraid that they were being disruptive and inconsiderate to fellow residents living in the open space temporary shelter, many remained sitting in their allocated space, not going to toilets allocated outside of the gymnasium.

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Image source: Japan Earthquake: Rescue, Recovery, and Reaction – The Atlantic

This scenario is not unfamiliar to nurses working in acute care, step down facilities, nursing home and other community care facilities where families complain about their love ones developing incontinence and decreased mobility. It’s a common case study where you have a person coming out of the hospital with incontinence and decreased mobility and nurses and loved ones are concerned about falls resulting in the person spending the rest of their life sitting in wheelchairs. Being put on pads due to their incontinence issues, the person may not wish to venture out in the public, and participate in activities reducing their social engagements and decreasing movement. So starts a vicious downward spiral where mobility is lost and depression sets in.

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All it takes is for us to care; to ask and encourage. To encourage our residents and patients and engage with them socially and to support movement. To ask about their preferences and how we can encourage our residents and patients to retain their independence and to maintain their mobility. This is a community effort, from governments to management to directors of nursing to the nurses and the care staff, we need to make time to care. Our residents and patients make an effort to not inconvenience us isn’t care a priority in healthcare in the first place?Person-centred care in Asia isn’t about being indulgent

Person-centred care in Asia is not about indulging a persons’ need for choices or the ability to be drastically different from everyone. It is about celebrating and supporting individuality and autonomy whilst maintaining harmony and social cohesion in the community. A fine balance, not in the pursuit of happiness but in a pursuit of peace. To be satisfied with the balance in life that brings us peace within.

it’s not 兴高采烈 but a 幸福美满的生活 that we yearn for.

Reference: Handwriting