“Please remember I’m still a person!” A carer’s solution to help hospital staff provide person-centred and holistic care

Zoe Harris cared for her husband at home before his dementia reached a stage where she was unable to cope, and he spent his final months in a care home. As a result of that experience, Zoe developed a range of communication tools to ensure that carers were aware of his needs and preferences, and which have subsequently been adopted by over 1,000 care homes and home care agencies. Her latest project is Mycarematters, an online platform where people, or someone on their behalf, can upload information to help hospital staff treat the whole person and not just their medical condition. @ZoeHarrisCCUK @Mycarematters @Care_Charts_UK

When I look back, I think Geoff had been showing signs of dementia for at least eight years before his diagnosis, and it was only a matter of months after he was finally told that he had what was probably a mix of Alzheimer’s Disease and Lewy Bodies, that his condition took a turn for the worse. I had to admit defeat and he moved first to a dementia assessment ward and, three months later, to a care home for what turned out to be the final 13 months of his life. Continue reading

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Could air pollution be a risk factor for dementia?

5543835085_fb0b017685_oDr Ruth Peters works at the Imperial Clinical Trials Unit of Imperial College London. In this blog, she discusses her recent Age & Ageing paper on the links between air pollution and dementia.

A few years ago, a chance conversation with a cardiologist about the adverse impact of air pollution on cardiovascular health set me thinking would such exposure also be a risk factor for dementia?

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The Power of Language

philly-harePhilly Hare leads the Joseph Rowntree Foundation’s major research and demonstration programme Dementia without Walls, which supports the collective voice of people with dementia through a growing national network of influencing groups. Philly has worked in the NHS, in local authorities and in the third sector, and holds an MSc in Applied Social Studies from the University of Oxford. She is currently a member of the Prime Minister’s Dementia Challenge Champions Group and tweets from @philly_hare

“Words are very powerful – they can build you up or put you down. When you are speaking about dementia remember this.”

This message comes from Agnes Houston, a former practice manager who is now living with dementia and is Vice-Chair of the European Working Group of People with Dementia. It is endorsed by many other people with dementia and their groups, as well as by key research such as the World Alzheimer Report 2012: Overcoming the stigma of dementia.

The use of negative and sensationalist language and images in describing dementia is still widespread. ‘Tsunami’, ‘time bomb’, and ‘crisis’, are common in media headlines, and military terminology, such as ‘onslaught’ and ‘battle’, are often used, even by dementia advocates and charities. Individuals are described as dementia ‘victims’, ‘patients’, ‘sufferers’ or even ‘cases’; as ‘dementing’, ‘fading away’ or in a ‘living death’; and as a ‘burden’ to family and society. Images of helpless people hiding their heads in their hands or cowering in a corner frequently accompany media articles, web pages or reports.

Yet this kind of representation is known to be harmful – it reinforces negative attitudes, bringing fear of old age to all of us, and has a very direct impact on people with dementia themselves through internalisation. This causes denial and reluctance to seek help – which leads to later diagnosis and poorer outcomes, social exclusion and isolation… and can result in hopelessness, frustration, poor self-esteem and depression. Dehumanising the individual can also lead to poor care, and to lack of support for carer and family.

At recent events organised by the UK wide DEEP network, people with dementia called for words that are more accurate, balanced and respectful. They also identified some ‘curl up and die words’ including ‘demented’, ‘sufferer’, ‘senile’ and ‘living death’. These words, that are negatively attached to the person rather than the condition, make people physically flinch when they hear them and create inaccurate stereotypes.

This is not a question of nit-picky semantics or political correctness. In her recent blog, former young carer Beth Britton points out: “If people with dementia didn’t find words like ‘sufferer’ or ‘burden’ offensive this wouldn’t be an issue, but many – not all – clearly do, and this is an incredibly easy change we can all make in how we write and talk about dementia… Our use of language is one really quick and easy way to help make a positive contribution.”

Medics have a very specific role here. They may particularly wish to reassess their use of the term ‘dementia patient’ or, worse, ‘dementia case’. In a health setting the former at least may, arguably, be appropriate, but if used generically to refer to all people who are living with dementia, these words trap them into a passive, medically-defined box which ignores their many other roles. If a doctor tells a person at diagnosis that they are ‘suffering’ from dementia, that sends an instant message of despair. Think how different is the message conveyed in the words “You have dementia, but it is possible to live well with it.”

DEEP recognises that it is going to take collective action to fundamentally change the choice of words that are used to describe dementia and its day to day experiences. Through the national Dementia Action Alliance, they have launched a Call to Action, asking others to join them to address the use of language associated with dementia, and commit to the three ‘C’s:

  • Check words and descriptions used in your printed materials against the DEEP Guide
  • Change any words and descriptions that people with dementia have identified as ones to avoid
  • Challenge words which you recognise as our ‘curl up and die’ words whenever you see or hear them – in newspapers, on TV, on websites and in conferences and meetings. And pass on the challenge to others to take forward in their own settings.

This week is Dementia Awareness Week. We hope that you and your organisation will consider signing up to the ‘Dementia Words Matter’ Call to Action, and most importantly of all, embedding the principles requested of signatories.

Follow the conversation around Dementia Awareness Week on Twitter: #dementiaawarenessweek / #DAW2015

Discovering ageing

14599057094_556c720cf5_oKenneth Rockwood is Professor of Medicine (Geriatric Medicine & Neurology) and consultant geriatrician at Capital Health in Halifax, Nova Scotia, Canada and Honorary Professor of Geriatric Medicine at the University of Manchester. Here he reports from the 12th International Conference on Alzheimer’s and Parkinson’s Diseases, held in Nice.

At the March 2015 AD/PD meeting in Nice, the big news, for me anyway, wass that ageing is making its way back into dementia. Sessions such as “Impact of co-morbidities on Alzheimer’s pathogenesis and cognitive function in mouse models” and “Stress and telomere maintenance mechanisms in human life trajectories” elbowed their way into a program with presentations on “the analysis of longitudinal amyloid PET images” and “How do we treat Alzheimer’s disease a decade before dementia?”.

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Still Alice – film review

cdn.indiewireDr. Vikas Bhalla is a Consultant Geriatrician at the West Suffolk NHS Foundation Trust and tweets as @drvkb

Still Alice is a film I have been looking forward to seeing for a long time, not only in my role as dementia lead for my hospital but also as a self-confessed film geek. There has also, of course, been huge hype surrounding Julianne Moore’s performance, for which she has won virtually every single “Best Actress” award this year, including an Academy Award, BAFTA, Golden Globe and Screen Actors Guild.

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When simple is no longer simple

Lawla Law has recently published her paper Effects of functional tasks exercise on older adults with cognitive impairment at risk of Alzheimer’s disease: a randomised controlled trial in Age and Ageing journal. This week she described the findings of the trial on the OUP blog:

Cognitive impairment is a common problem in older adults, and one which increases in prevalence with age with or without the presence of pathology. Brain AgingPersons with mild cognitive impairment (MCI) have difficulties in daily functioning, especially in complex everyday tasks that rely heavily on memory and reasoning. This imposes a potential impact on the safety and quality of life of the person with MCI as well as increasing the burden on the care-giver and overall society. Individuals with MCI are at high risk of progressing to Alzheimer’s diseases (AD) and other dementias, with a reported conversion rate of up to 60-100% in 5-10 years. These signify the need to identify effective interventions to delay or even revert the disease progression in populations with MCI.

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How additional diagnostic tools add to the clinical dementia diagnosis

Anouk Meijs did her internship in epidemiology at the department of Geriatric medicine of the Radboud University Medical Center and is now working as an epidemiologist at the National Institute of Public Health and the Environment in the Netherlands. She has recently been published in Age and Ageing journal.dementia diagnostic tools

Although Alzheimer’s disease makes up the bulk of dementia diagnoses, many other forms of dementia exist as well. Establishing the correct dementia diagnosis is important for treatment but can be difficult. Therefore, we use additional diagnostic tests such as brain scans and lumbar punctures, but it is not really known what benefits these tests – that always come with costs and patient burden – have to offer in daily practice. Continue reading

It takes heart to donate a brain

Paul Francis is Professor of Neurochemistry and Director of Brains for Dementia Research at the Wolfson Centre for Age-Related Diseases, King’s Collegeshutterstock_126767594

Brains for Dementia Research, an initiative by Alzheimer’s Society and Alzheimer’s Research UK in association with the Medical Research Council seeks to address the shortage of high quality brains from people with and without dementia, available to researchers. This is a good opportunity for BGS colleagues to contribute to an important research function in an area of medicine that is part of their day to day work. Continue reading

Driving with Dementia

 

Professor Joseph E Ibrahim (MBBS, GradCertHE, PhD, FRACP, FAFPHM) of The Victoria and Tasmania Dementia Training Study Centre and Monash University introduces his short animation about people with dementia who want to continue to drive. 

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Assessing a patient’s fitness to continue driving a motor vehicle following a diagnosis of dementia presents an important personal, professional and community challenge. The revocation of a person’s license is a traumatic event that significantly impacts on their quality of life. This is especially so for patients who are living in regional and rural areas. This animated video addresses some of the complex issues involved in assessing whether a person with dementia is fit to drive. Continue reading

Low Expectations – Attitudes on choice, care and community for people with dementia in care homes

Jane Buswell is Chair of the BGS Specialist Nurse and Senior Practitioners GroupCapture2

A report by the Alzheimer’s Society, with foreword provided by the actor, Kevin Whately, indicates that along with the usual examples of both good and bad care being delivered around the country, expectations are worryingly low among people in care homes and their relatives, as well as the staff working in the care homes.

With 80 per cent of residents living in care homes having either dementia or significant memory problems, says the Alzheimer’ Society, providing good care for these people should be the primary focus of the care home sector. More needs to be done to raise expectations about the quality of life for people with dementia in care homes because lower expectations will always be self-fulfilling.

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