The poor quality of home care services is never far from the headlines these days. Recent documentaries – such as the Channel 4 Dispatches ‘Britain’s Pensioner Care Scandal’ – have highlighted the industry-wide problems of visits being cut short, unfair terms and conditions for staff, and variable quality and regulation of services. It all makes for a worrying picture.
But when we started working as home care workers for a research project at the University of Nottingham, this negative portrayal didn’t resonate with the standard of care we saw provided. Yes, we saw some of the same problems, like the effect of zero hour contracts and lack of payment for travel time, but we also found positive and encouraging examples of care.
The research project was about understanding what ‘good’ home care looks like. It involved working for 11 months with a reputable home care provider, where we completed the usual training. Some of the visits we undertook were to help clients get up and ready for the day, others were for companionship and involved chatting or taking clients out to local cafes and shops. We got to know our clients and their relatives and enjoyed spending time with them.
In the social care sector, it’s common for home care visits to last as little as 15 minutes. The organisation we worked for offered a minimum of one hour, but we still frequently found it very difficult to leave on time and would often spend extra time with our clients when we felt it was unsafe or unkind to leave them at the end of the hour. We wanted to make sure clients were safely washed and dressed before we left them, but they weren’t always ready to do this and perhaps wanted to enjoy their breakfast and a chat first (who can blame them).
Because we were working with people with dementia, it was also often impossible to explain in any meaningful way why leaving on time was an issue, and so it felt unkind to try to do this.
Other care workers at the provider said they regularly spent unpaid time with clients and were not paid for the time travelling between visits. The number of hours they received each week was also unpredictable and understandably this caused some to worry about their finances. We were thankfully paid by the university so this didn’t affect us, but the long hours were a challenge and meant we often skipped meals and missed out on time with family and friends.
Despite these issues, we still saw staff going ‘above and beyond’ the call of duty. We witnessed care workers bringing dolls and pets to visits for clients to interact with. Others used their own money to purchase treats for clients (such as scones and strawberries), and referred to clients as a member of the family. Most care workers also demonstrated a high level of skill and sensitivity in communicating with clients, especially those with dementia. Some also told us how they take their work home with them – as clients occupy their worries and thoughts outside of ‘usual working hours’. Of course, this may be a reflection of the recruitment and training standards in the company we worked for, we know it’s not the case everywhere.
One key thing we found, and other care workers told us, was that care visits are particularly rewarding when there are signs of a reciprocal relationship between care worker and client. For example, when clients show their appreciation and signs of their personalities, which may otherwise be concealed by their symptoms of dementia. Some of the most enjoyable visits were those where clients remembered things about us, like where we’d been on holiday, and shared stories of their own experiences, as this enabled a more reciprocal conversation.
We are now interested in finding out more about how care workers may find value or reward in care visits when the client is uncommunicative, or cannot articulate their thanks. Our time with the company taught us that care work is a very diverse and highly-skilled job, and it deserves both better recognition and higher pay.
Samantha Wilkinson and Lucy Perry-Young
A version of this article first appeared in Community Care: http://www.communitycare.co.uk/2017/05/11/saw-care-workers-going-beyond-call-duty/
As a first year PhD student at the University of Nottingham, I initially became interested in researching dementia when I was exploring topics for my Masters dissertation. I was curious about issues of representation and stigma, particularly with the idea that some groups of people appear to have less of a voice than others. It wasn’t long before I came across the work of Hannah Zeilig, whose brilliant exploration of metaphor and dementia highlighted many of the issues surrounding the ways that dementia, and individuals with dementia, are represented.
Based primarily in the School of English, with a secondary base in the Institute of Mental Health, my PhD aims to compare data from the media and from online forums for people with dementia, to understand how identity in dementia is constructed and what this reveals about attitudes towards people with dementia.
The messages perpetuated in the media and popular culture tout the idea that dementia causes a ‘living death’ and leads to an ‘empty shell’ of a person. This is problematic because a person with dementia is therefore seen as a non-person, lacking a sense of self or individuality. And decades of dementia research has shown that this attitude leads to inadequate care practices.
On the contrary, provisional research undertaken for my Masters dissertation has shown that there are multiple ways that users of an online forum for people with dementia can construct and maintain identity. This might be by giving dementia a colloquial nickname – ‘Alz’ – or by viewing dementia as an external force outside the body – ‘The disease is the enemy, not you’. Using online forums as a data source means the data is naturally occurring and spontaneous, so as to give a real insight into the first-hand experiences of dementia.
There is much work to be done in understanding how identity can be facilitated and maintained as dementia progresses, and I hope that the linguistic perspective of my research will offer novel ways of addressing these issues to improve standards of care and representation.
In my second year of medical school at the University of Nottingham, I was set the task of researching an aspect of clinical communication skills that interested me. I chose to focus on communication with people with dementia – a set of skills that, due to the UK’s aging population, is likely to be required more by my generation of healthworkers than by any generation before. The following account is the summary of my research and a reflection on my own first interactions with patients with dementia.
There is a growing nationwide problem regarding poor treatment outcomes of people with dementia, who fill one quarter of UK hospital beds, yet whose disorientation and language loss can often leave them misunderstood or overlooked by clinicians. To improve dementia care, the General Medical Council has recommended a style of “person-centred” communication involving respect, good explanation skills and patience, the features of which I shall now explore.
Respect
Respect can be shown to patients with dementia by not pre-emptively assuming brain dysfunction or adjusting communication in a patronising manner. Elderspeak, the “baby talk” commonly used to address older patients, including higher pitch and diminutives such as “sweetie”, has been shown in studies to double the rates of resistance to care, such as withdrawn or aggressive behaviour. Daunted by my first interaction with a person with dementia and eager to act empathetically, I began with “how are we feeling today?” and regretted this when he replied “not sure about you but I’m okay!” He, of course, must have found the use of “we” very insulting. After all, I am sixty years younger, yet my elderspeak treated him as I would a small child. When initiating future consultations I must firstly assume full mental capacity; I should only adjust to simple sentences and increase non-verbal actions - smiling and nodding - if the patient seems confused. Elderspeak should be avoided.
Explanation skills
The patient was confused when I explained my intention to take his medical history, but I was initially unsure of how to rephrase myself more clearly. I then noticed the bright light from the window shining into the patient’s eyes, repositioned his chair in the shade, and repeated my explanation in simpler sentences, which I could tell was effective as he nodded and stopped frowning. Altering the environment like this is one technique for reducing confusion. Having researched explanations in dementia further, I will consider in future using the person’s name often, using pictures, repeating myself patiently, not moving between topics too quickly and even playing soft background music, which has been shown in studies to improve sensory awareness and concentration.
Patience
The Alzheimer’s Society describes how a person with dementia may have a reduced vocabulary or become “stuck” on sounds. Such barriers to self-expression can lead to loss of confidence and anxiety so the patient should never be rushed into an answer. I have previously noticed my own habit of asking double questions without waiting for a response, in an attempt at clarification. This can be confusing for anyone, but particularly so for those with dementia. I did not want the patient to believe that I was impatient, so when he was unsure about his medications, I suppressed my instinct of asking “any pills when you wake up? Do you have prescriptions?” and waited while he deliberated. Eventually he removed a prescription from his pocket and showed me his list of medications, proving that I must value pauses to avoid “outpacing” the patient.
In summary, person-centred communication simply means to respect the identity of a patient with dementia. I have practised this with mild dementia through respectful language, sensitivity to the environment and interviewing at the patient’s pace. The most valuable thing that I have learned from the written testimonies of much more experienced carers is to always take the time to see things from the patient’s point of view – to put the “person” at the “centre” - so I intend to use resources such as the Alzheimer’s Society’s “This is me” leaflet to further allow me to place myself in my patients’ shoes.
“It’s useful to go out of this world and see it from the perspective of another one.” Sir Terry Pratchett, who died of Alzheimer’s disease complications in 2015.
Resources that I have found useful
http://www.scie.org.uk/dementia/after-diagnosis/communication/conversation.asp
https://www.alzheimers.org.uk/info/20064/symptoms/90/communicating_and_language
http://www.alzheimers.org.uk/thisisme
http://www.careuk.com/care-homes/talk-dementia
10 helpful hints for carers by A. House and J. Andrews.
“How can we take the pressure off health and social care?” This was the question posed to a panel of professionals by the Lunar 21 discussion group on April 3rd, 2017. The original Lunar Society was a group of 18th Century Midlands’ friends and business men – engineers, factory owners, entrepreneurs – who met to share ideas, always on an evening near the full moon so they would be more able to find their way home afterwards. Lunar 21 is a revival of that spirit, open to members of the public who want to meet, hear and ask questions that shed light on Derby’s place in the 21st Century. Graham Bennett, an architect by profession, painstakingly recruited and briefed the panel, made up of a CCG chair, a hospital clinical director, a former chief executive of two NHS trusts, a journalist, and me, representing social care. Graham opened the discussion, introduced the panel and skilfully chaired the meeting so that many people attending had their say.
Asked whether the productivity of health services could be improved if the expertise of industry were brought to bear on the NHS, the general view was that the benefits of managerialism had largely been realised by now; the NHS has been transformed into a lean machine. However, the budget needed to meet all its targets is simply not available; there is simply a need for more cash. While the speakers and audience largely agreed on this, the mantra that nobody ever votes to increase taxes was invoked. From a different perspective, clinicians on the panel pointed out that continually-rising expectations of the NHS need to be restrained. It’s not the panacea for all of society’s ills, and we therefore were asked to reflect on what is the main purpose of health and social care. By implication, then, what should not be within the remit of the NHS? We were reminded by the journalist that happiness is not well correlated with healthcare expenditure, and that rates of happiness are in fact higher in some countries, including Italy and Spain, where less is spent on healthcare than in the UK.
Healthy lifestyle came up as a contributory factor to conserving limited resources for healthcare, as the room was full of obviously well-preserved baby boomers. There was also recognition that young people - in particular those from disadvantaged backgrounds, and even primary school children, need to be educated to take responsibility for their own emotional and physical health. Supporting older people with dementia is another way that families clearly save the NHS and social care budgets.
Therefore, the support of families for their members, education of young people and healthy personal lifestyles were all endorsed as means to take the pressure off the NHS. To this rather familiar refrain a community organiser added a fourth less well-understood mechanism: community development to improve health. This ‘asset-based’ approach has particular appeal in areas like Derby where there is ethnic diversity and considerable health inequality. How are community organisations already contributing to the welfare and health of the population? Members of religious groups, sports and leisure clubs, civic organisations and the like already promote trust and wellbeing through their activities. These organisations may also provide a platform for building health literacy and for health promotion interventions. How much more could they do? The answers to these questions could be good news for a cash-strapped health service.
I have launched a new blog site about rural dementia. This builds on the current study, Scaling the Peaks, with which I am involved. The site reflects the views and experiences by Fiona as she undertakes the research “out in the field” (forgive the pun) of the Derbyshire Peaks. The study aims to explore the experiences of people affected by dementia who live in a rural area and to help shape future services. Without evidence of the diverse range of needs then service design will remain at best an urban modelled service. It is clear that people living with dementia need access to equitable choices in care regardless of their location.
Rural dementia is a relatively new aspect of dementia care research in England. Currently the majority of national policies in relation to dementia fail to comprehensively include the impact of living in a rural area. Indeed the English metrics used to measure levels of need do not include location as a factor which directly impacts upon the funding local statutory services receive. This neglect has huge implications for not only those who are living with dementia but also those who care for them including third sector organisations, private companies, statutory providers and other not for profit organisations. Family and friends are often assigned the long haul work as primary care giver which can often be a mixed blessing in a rural area.
The aims of the blog are to:
- Share the experiences of undertaking research to a wider audience
- Share thoughts about the diverse range of rural services and providers
- Comment on some of the connections between national policy, local organisations and rurality especially those which influence dementia care
- Comment on the wider implications of care for families affected by dementia
- Provoke some debate by providing an entertaining way of engaging with research
- Invite comments from readers so that those not directly involved can contribute their own ideas
The views on the site are my own. I am kindly funded by the Alzheimer’s Society and supported by the Institute of Mental Health, Nottingham. The blog is not intended as an academic resource but please acknowledge the sources of information if you use them in your own work.
Please take a look at https://ruraldementiaresearch.com
Photograph: The Peaks 27th February 2017. Acknowledgment: Villager Jim
Health care assistants and social care support workers play a central role in front line care provision. For not only are they are usually the first point of contact for those in receipt of care, they also deliver around twice as much of this care as registered nurses, including many of the complex roles formerly undertaken by these nurses. They are also growing in number with over 300,000 new carers commencing work in health and social care organisations each year. Due to demographic trends towards an ageing population, these numbers are likely to progressively increase, particularly in the specialisms of older age and dementia. Policy makers have responded to these challenges with national strategies such as the National Dementia Strategy, aiming to improve the delivery of front line care. In spite of this, front line practice is still often characterised by inconsistency and the common adoption of depersonalised and task centred approaches. These inadequacies have been exacerbated by assumptions that nothing can be done to improve the wellbeing of people with dementia or that being a good carer is all about innate characteristics and common sense rather than something that can be acquired through training. In addition, in spite of the widespread advocacy of key concepts such as person centred dementia care, there has been a lack of clarity on how it should be implemented in practice and on what resources are required in order for this implementation to be achieved.
In recognition of these issues, increased attention has recently been given to the training needs of the front-line care workforce by policy makers culminating in the Cavendish Review in 2013. The review called for the introduction of a Certificate of Fundamental Care – now called the ‘Care Certificate’ and recommended that all new front line care workers should achieve this before working unsupervised. The Care Certificate, sets out 15 standards that are required to provide safe, effective and compassionate care. As such, it aims to promote a consistent approach to staff training and induction and encourage improvements in career development pathways and the safety and quality of care provided by care organisations. Although not mandatory, as from April, 2015, it is now expected to form part of training for new recruits to care organisations in England with the Prime Minister’s Challenge on Dementia suggesting, in 2015, that all newly appointed care staff should undertake this training. In order to optimise its impact, the implementation of the Care Certificate is now being evaluated in an 18-month study funded by the Department of Health Policy Research Programme. It broadly aims to assess how successfully the Care Certificate meets its stated objectives and to explore areas for improvement. Follow this link to find out more:
I met Chris and Jayne at a meeting of researchers in Maastricht recently. They were representing the European Association of People with Dementia, of which Chris is vice-chair. Along with a Norwegian couple, they were advising the network on involving people with dementia in research and product development.
Chris, Jayne and their family of five adult children allowed Panorama to make a documentary about living with dementia, with cameras installed in their home for one year. The material led to the frank programme screened last June and which can be viewed here:
http://www.bbc.co.uk/iplayer/episode/b07dxmyh/panorama-living-with-dementia-chriss-story
It is inspiring to hear first-hand from someone living with dementia. Chris articulates his feelings and his opinions very well. Diagnosed at 50, with vascular dementia and early-onset Alzheimer’s, Chris chose a care home soon after the problem was recognised. At one point in the programme, he surprised his wife by saying he preferred to stay in the care home. The reason: he has no responsibilities there. He feels normal.
We researchers find it hard to define wellbeing, but feeling normal may be a good outcome to aim for in dementia. It’s a way of erasing the power differential between those with a diagnosis and those without. It may indicate a sense of inclusion, acceptance, contentment.
Watching the documentary, I was humbled to see the day to day problems that Chris and Jayne had to overcome in the course of a year, as the effects of the dementia grew. One thing that Chris ‘forgot’, to Jayne’s relief, was his wish to go into care sometime soon. A world away, chatting with them over dinner in a Maastricht restaurant, I enjoyed a very normal conversation; about families, about holidays and about the impending snowstorm.
What I learnt from the Panorama programme was that the disabling effects of Chris’s dementia fluctuate quite a lot. At one point he was shown being taken to hospital with the effects of a stroke. These effects were imperceptible to me when we met. I’d been working with a mental model of dementia that leads to relentless decline and increasing dependency. After watching the programme and meeting Chris who spoke eloquently and with humour about his experience, I had to revise my assumptions. With planning, support from family and (I suspect) good medical management, Chris enjoys periods of normality like the ones I shared with him and Jayne. Their common sense approach to life and their refusal to hide from the reality of dementia are inspiring. Thumbs up for making courage and candour normal in dementia.
Picture of Chris and Jayne courtesy of BBC.
I’ve invited Dr Shibley Rahman (@dr_shibley) to give a seminar as part of our seminar series here at Centre for Dementia, Institute of Mental Health (@InstituteMH). https://idea.nottingham.ac.uk/news/events/centre-dementia-seminar
Shibley can’t make it in person, but has sent a video presentation – so I thought this was an opportunity to share this online, and invite people to join the discussion via twitter. Shibley will also be responding via twitter – so it’s a bit of an experimental seminar / webinar…! Everyone is welcome to join the discussion – using hashtag #DFCdiscuss.
Join live at 11:30 GMT next Thursday 12th Jan. But you’re welcome to watch the presentation before or after: https://vimeo.com/198066585
Have a quick look through the slides (without video) https://t.co/ApRQZPSv1w and read his blog here: https://t.co/xwWtiIz9Q8
I have been really pleased with the responses of many people on twitter about this event. I mentioned this on tweetchat #diversealz and the coordinator @DiverseAlz has been very supportive of the idea. In fact #diversealz tweetchat have arranged the theme of the discussion in the evening to also be about DFC and relationship with dementia friends (8pmGMT).
My aim in making the presentation online and opening up the debate on twitter is that it enables people with dementia and their carers to join in the debate, when they may find it difficult to attend a meeting at the university. I recognise this still does not address the digital divide problem, and we need to continue to address that as well. Also it widens the debate to an international level (people join #diversealz chats from US and Canada).
Please join us on Thurs 12th Jan 2017, and I’ll post a summary of the event (including your posts on twitter!) This summary will also inform my knowledge exchange fellowship about support for people with dementia in the community – funded by Alzheimer’s Society (@AlzheimersSoc), in collaboration with Alzheimer Nederland (@AlzheimerNL)
Kate Swaffer is phenomenal. Diagnosed with frontotemporal dementia before the age of 50, she has been a leading advocate for dementia ever since, with a much-followed blog site (https://kateswaffer.com/), addresses at numerous conferences and the best-selling book whose title heads this blog post. She is a member of the World Dementia Council and co-founder and chair of Dementia Alliance International, the first global organisation exclusively for people with dementia. It is entirely fitting that she is the South Australian nominee for Australian of the Year 2017 and of course we hope she wins. Last year’s victor was Chief of the Army and in 2015 the winner was a campaigner against domestic violence.
The book makes interesting reading, with some biographical material, some very illuminating descriptions of the difficulties Kate has with memory, words and so on, and then a lot of material aimed to support people with dementia in their lives but also a call to action for people with dementia to be more involved. She acknowledges that there is some repetition in her style, and this is indeed the case. However, points made more than once are perhaps the important ones. I don’t want to post a conventional book review but would like simply to discuss the two points that most struck me.
One experience Kate has often had is being challenged over her diagnosis. It seems that if you appear to be functioning well or speaking at an international conference, there is an assumption that you can’t have dementia and thereby there is an implication of fraud. Kate describes how offensive this is. You would not be challenged if you said that you have cancer or diabetes, or just about any other condition, so why is dementia different? Surely, the earlier that cases are diagnosed, the more likely that people will be less impaired and therefore well able to express themselves, especially if there is support for their writing. It is unlikely that most people would choose to have a diagnosis of dementia, especially if they don’t have the condition*, so as it is not appropriate to interrogate people about their medical histories, then we must accept what they say and we should regard such questioning as rude and inappropriate when we hear it.
Kate has an ear for a strong catch phrase and one of these is Prescribed Disengagement, which she has trademarked, hence the capitals. This is what happens in most cases after a diagnosis of dementia. The person is advised to stop work, stop driving, stop most things, and concentrate on living out what remains of their life. Kate quite rightly points out that this is the opposite of every other medical condition, where the patient is encouraged to fight the disease, keep going, press for reasonable adjustments to enable them to keep working, and so on. She also makes a strong argument that if she had the same impairments that she has, but due to another condition such as brain injury or stroke, she would expect to be offered a whole list of rehabilitative opportunities, e.g. speech and language therapy, dietary advice, counselling (including grief work), social work and so on. This of course is completely unjustifiable and I’d totally agree. I have suggested myself that we consider ‘the Deal for Dementia’ and this is to some extent reflected in the current interest in post-diagnostic support. Though I fear that what is considered is still pathetic in relation to what people with dementia really need.
*You may remember the Guinness case of 1991, where a defendant was released from prison because he was said to have Alzheimer’s disease. However, this seemed to resolve quite nicely after his release.
Access to the outdoors is known to have a positive impact on wellbeing, due to such benefits as exercise and activity as well as the promotion of social inclusion and interaction, however, for people with dementia, this access is often denied. The reasons for this are wide ranging including disorientation and a lack of appropriate support to compensate for this, inadequate public transport provision and the negative and stigmatising attitudes of the wider community.
A similar exclusion from outdoor spaces is experienced by people with dementia living in care homes. For in spite of the widespread availability of gardens and other outdoor spaces within these settings, my experiences as nurse suggest that these outdoor spaces are rarely used by residents. While inadequacies in dementia care are often attributed to corresponding inadequacies in the front line workforce, wider factors are also at play in this exclusion. These include the inappropriate design of outdoor spaces and the lack of availability of staff to facilitate access to these spaces.
Also important are care home cultures which place an overriding focus on minimising levels of risk amongst the resident group. Thus having a resident ‘wandering off’ on their own outside or falling over and hurting themselves are seen as incidents to be avoided at all costs, with care home staff having to account for and justify their actions should such incidents happen on their shift. Consequently, in their negotiation of the fine line between care on one hand and control on the other, due to the wish of care home staff to avoid such events, the emphasis is normally placed on the latter. This can lead to overcautious and task centred approach to care and a subsequent ‘institutionalisation’ of more vulnerable residents with a focus on ensuring their physical safety rather than on their individual social and psychological needs and aspirations. This is exacerbated by the fact that people with dementia are not always able to fully express these needs as well as by high levels of staff turnover and the increasing scale of care homes meaning that staff often do not gain familiarity with each resident and be ‘person centred’ in their practice. In view of these multiple barriers to outdoor access, measures aimed at overcoming them should adopt a similarly eclectic approach. These measures could include the incorporation within each persons care plan a consideration of their need for outdoor access and how this will be achieved and which potentially permits an acceptable level of risk in this achievement. ‘Dementia friendly’ spaces and support to access them also need to be available both for people living in care homes as well as in the wider community. While on a wider level, government policy and legislation should recognise that access to the outdoors for people with dementia is a basic human right and key to the promotion of their social inclusion.
Follow this link to find out more: http://www.tandfonline.com/doi/full/10.1080/13607863.2016.1222351
