Treating dysphagia: understanding the need for training

5328790665_b4a675915d_oHelen Willis is a Dietitian at Wiltshire Farm Foods: in this blog she looks at caring for older people with dysphagia, and the importance of proper training

It is often the case that with such a media and governmental focus on health issues such as obesity, other nutritional issues get pushed aside and given little focus. One example is the very common swallowing condition, dysphagia.

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Elvis is alive and based in Malta

tashDr Simon Conroy is a geriatrician at University Hospitals of Leicester, Honorary Senior Lecturer, University of Leicester and an Associate Editor for Age and Ageing journal. 

Have you ever been to Malta? It’s a beautiful country with a warm Mediterranean climate and an enthusiastic team of clinicians engaged in improving the care of frail older people.

Along with Professor Tash Masud from Nottingham, I was privileged to be invited to speak at their inaugural geriatric medicine conference in May 2015.

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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

Older people want more opportunities to plan their care

aaPatients are increasingly planning for end-of-life care, but services aren’t always available, reveals new study.

Older people who want to talk to health professionals about advance care planning (ACP) are not always able to do so, a new study published in Age & Ageing has revealed.

More than a third of respondents in the East Midlands study said that they would be interested in discussing advance care plans with a health professional. However, only 17% of respondents had prepared an advance care plan, and only 5% had been actively offered the opportunity to talk about it with a health professional.

Advance care planning is a process of assessment and dialogue to document an individual’s preferences for future care and treatment. It can result in ‘advance’ directives (often referred to as ‘Living Wills’) which record views on specific treatments; the nomination of a proxy to represent the individual if they lose mental capacity; and statements of values and views about care and treatment.

This study received responses from 1,823 people aged 65 and over, living in community settings, and indicated an increase in the number of patients putting advance care plans in place (up from 8% in a 2005 poll). The study concludes that these results should encourage healthcare professionals to explore what people understand by ACP, and the role of professionals in providing it.

Corresponding author Irfana Musa of Leicester Royal Infirmary said:

“With the population growing older and living longer, we are treating many more conditions such as dementia, in which an individual’s decision making ability becomes impaired. Advance Care Planning can help people think ahead and also inform others of their wishes in anticipation of a time when they cannot communicate themselves.

This study gives us a flavour of what the population understand by Advance Care Planning, whether they would engage in the process, and what the barriers might be.”

Speaking on behalf of the British Geriatrics Society, Prof. Adam Gordon said:

“Doctors and health care professionals often feel nervous about exploring issues around advance care planning in case they offend or unduly distress patients. This sometimes stops them preparing these plans in discussion with patients, even when they think it might be in a patient’s best interests.

This study tells us they should be less nervous and more forward in introducing advance care planning concepts. Such discussions, though, can take time and this is one of many reasons we need to reflect upon the time available to general practitioners for routine consultations in older patients with frailty and work to increase resources in primary care to support patient-centred care planning.”

Dementia awareness

dawAs part of Dementia Awareness Week and Dying Matters Awareness Week the BGS blog will be focusing on these two issues for the next few days.

In this post, Tom Dening (Professor of Dementia Research at the Institute of Mental Health, University of Nottingham) discusses public enthusiasm for shared knowledge around dementia.

Public appetite for information about dementia is about more than just awareness. It’s more like a great thirst, and has taken my breath away on at least two occasions recently.

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The ‘F’ Word – and Many Other Things

Picture1Kit Byatt is a consultant geriatrician and general physician in Hereford in 2001, with wide interests both within geriatric medicine and outside it. He wrote this piece having been challenged by a recently-published Age UK report, presented by Professor Adam Gordon at the recent BGS Spring Conference.  

For those of you who, like myself, hadn’t read Ipsos MORI’s report for Age UK, Understanding the Lives of Older People Living With Frailty, A Qualitative Investigation, there is much food for thought within.  Luckily for me, this intellectual nourishment was presented in a highly palatable form at the BGS Spring Meeting.

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A perfect union of mind and body?

Clifton_House,_Belfast,_July_2010_(04)Mark Roberts is vice chair of the BGS Northern Ireland Council, and a Consultant in Acute and Geriatric Medicine. In this blog, he looks at the recent joint meeting hosted by the BGS and the Royal College of Psychiatrists

The annual joint meeting between the Royal College of Psychiatrists and the BGS in Northern Ireland passed again with plenty of food for thought, the amiable atmosphere between two closely linked specialties proving once more a useful foundation stone for a good meeting.  The dignified Edwardian surroundings of Clifton House in Belfast provided the backdrop for a joint sandwich lunch followed by our respective business meetings.  Thereafter an energetic programme was presented by both Geriatricians and Psychiatrists of Old Age to the mixed audience.  Those engaged in the mysterious art of Psychiatry showed their class and hospitality by giving us Geriatricians the boardroom whilst shoe-ing themselves into the ‘attic space’ for their business meeting.

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BGS Rising Star Award: Daniel Davis

BGS Logo CMYKDaniel Davis is an SpR in Geriatric Medicine on the NW Thames Rotation, spending 50% of his research time as a Clinical Research Fellow at the MRC Unit for Lifelong Health and Ageing at UCL.

Daniel is the joint winner, alongside Roman Romero-Ortuno, of the BGS Rising Star Award 2015.

I have been a SpR in geriatric medicine since 2006, the longer route being through pursuit of an academic career alongside clinical training. My core interest is the relationship between delirium and/or acute illness and trajectories of cognitive decline in large population-representative studies. These are complex relationships which need a wide range of research, from the biological underpinnings through to the implications for health care policy.

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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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BGS Rising Star Award: Roman Romero-Ortuno

BGS Logo CMYKRoman Romero-Ortuno is a Consultant Geriatrician at Addenbrooke’s Hospital, and an Honorary Visiting Fellow at the University of Cambridge.

Roman was jointly awarded the 2015 BGS Rising Star award; in this blog he discusses his research on operationalisations of frailty in older adults and integration of care.

I am honoured to be one of the recipients of the 2015 British Geriatrics Society (BGS) Rising Star Award. I am delighted that my research contributions have been deemed to have potential for translation into improvements to the care of older people.

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