Friends for Life (Nottm) "Ay'e up mi duck", have left the group in good hands while temporarily away on Hols in Cyprus. Cynth and myself have previously tried to raise funds for a "Magic Table" an Interactive table for small group of PLWD (people living with dementia) to play games, tackle puzzles and view history and geography, etc. They cost any where around £2K/£5000 we had a donation last year from friends in Cyprus who follow what the group accomplish. Having attended the donors' wedding yesterday, I was asked to make a little speech about the activities of our Dementia group, to be praised and supported once more with financial support, giving us a chance of approaching our target and dreams of a Technical support for the group. On our return to UK we will be arranging a demonstration, to see what are the best Apps for our group. Exciting times, and hopefully we can fulfil our targets, thanks so far to our friends of our group, who just happen to live in Cyprus.
In addition 2 of them do a rendition of a "Pam Ayer's" comedy sketch "I can't do it"!, and have agreed to re-create it on either video or a live zoom link for the group. Hopefully we will be able to share it at some point, although that is not one of our talents, as sadly we sent 4 virtual walks, which somehow didn't arrive and presumably are still walking somewhere?
Steve & Cynthia c/o Friends for Life DEEP (Nottm) "Ay'e up mi duck".
Working in a Dementia-Specialist Care Home During the Coronavirus Pandemic – A Medical Student’s Insight
As my fourth year of medical school came to an abrupt end due to the pandemic, I was sent off back to my home in Cambridgeshire with little idea of what was to happen over the next few months. I found myself without the structure and purpose that I was used to having so begun searching for jobs. A family friend highlighted to me that a local dementia-specialist care home, where her mother is a resident, was recruiting for care assistants. I felt this would be a fantastic opportunity to give back to the more vulnerable members of society as well as developing skills which I hope to make me a better doctor in the future.
Lots of things have changed in the care home since the start of the pandemic, and understandably, this is challenging for many of the residents. Family members now unable to visit, restrictions on numbers of residents out of their bedrooms, staff wearing masks, reduced activities – to name just a few. Now, for you and I the changes in daily life as a result of the pandemic have been vast and it has been challenging. Yet for the residents with dementia, they are experiencing this dramatic change without being able to understand the reasoning. On numerous occasions, residents have become frustrated with me and said ‘you’re just making this up!’ and I can understand why they feel this way; it is almost unbelievable, a story out of a book, not real life.
Other residents have been frustrated that the staff are wearing masks – ‘I can’t understand a word you say with that silly thing on your face. If I can’t understand you there’s no point in you even speaking’. Despite efforts to speak loudly and clearly, the mask takes away the ability for residents to read your emotions and facial expressions and is particularly challenging for those hard of hearing. Although it is essential to wear masks to limit the spread of the virus within the home, it places a large barrier to communication between staff and residents and limits the ability to form a good rapport.
I have had conversations with residents who feel ‘abandoned’ by their family, ‘left there alone to die’. In reality, family are unable to visit to protect their loved ones and are most likely struggling at home with the fact they can’t visit. However, this is not often understood or retained by the residents. The care home has been fantastic in setting up video-calls and phone calls however, due to the age of the residents and their cognitive ability, many struggle to communicate effectively or understand who they are speaking to.
A memorable event for me was when one resident was unhappy that I had sat her over two metres apart from another resident who she is good friends with. I explained to her the reasoning for this however, when I returned with a drink a few minutes later she said to me in a rather harsh voice ‘that better not have any virus on it’ as though I was to blame for the current situation.
Supporting residents with dementia during this pandemic has given me a really good insight into the impact of a pandemic, and of changes to routine, for people living with dementia. It has really put things into perspective and I feel very grateful that I am able to understand the reasons for the changes due to COVID-19. I look forward to when times begin to normalise and the residents are able to see their loved ones again.
Most people know the devastating impact that dementia can have on a person and their family, and it is rare to find someone who has not known someone affected by the disease in the UK.
However, perhaps less often thought about is the impact that dementia also has in less developed countries. Healthcare burdens that may spring to mind when thinking of Low and Middle Income Countries (LMICs) may be more along the lines of infectious diseases. However, as countries develop, infectious disease prevalence tends to decrease, due to better housing conditions and hygiene practices, and age-related disease prevalence increases, due to increased life-expectancy leading to ageing populations. The altered demographics of regions bring about new healthcare burdens, and an increasing problem in many developing countries is dementia.
Whilst researching for a project on “Dementia Risk Prediction Modelling in Low and Middle Income Countries”, I was shocked to find that over 66% of the world’s dementia cases are in LMICS, with LMIC dementia cases predicted to increase by 246% by 2050. This puts a huge strain on already overstretched and under-funded healthcare systems in many of these countries, yet most research into dementia takes place in High Income Countries (HICs), as this is where the majority of research funding comes from.
There is undeniably a stigma surrounding mental health problems across the world. This is arguably due to a lack of understanding of the disease processes underlying psychiatric disorders, and a lack of awareness that effective management can aid recovery or stabilisation of someone’s condition. With increasing ageing populations in many countries, there needs to be more focus on educating people on not only the symptoms of dementia and how to seek treatment for it, but greater publicity of the major risk factors for dementia. This is because some risk factors are modifiable, such as obesity, social engagement and hearing impairment. If early intervention could be made to reverse these risk factors in LMICs, among others, this could help to lower individuals’ risk of dementia.
Obviously, this is a multifaceted issue, as one cannot just flip a switch and make this happen overnight. Research into the risk factors that are most predictive of dementia in LMICs is continuing, and once clear links have been made, further steps can be taken. However, the desperate need for funding is evident, as large public health campaigns are expensive and hard to implement, especially in rural areas that may not have readily available access to the internet. Also, healthcare funding is another issue, as there needs to be enough resources to allow positive interventions to be made in people with modifiable dementia risk factors, so that the process of identifying the dementia risk factors present in the general population is worthwhile.
So, although there are clearly barriers to easing the dementia burden in LMICs, continued research will undoubtedly bring more attention to the issue. Hopefully in the future, the stigma surrounding dementia worldwide will decrease, prompting more funding to this ever-expanding field, and dementia prevention strategies will become more viable to be put into practice in many LMICs.
In 2018, I came to work at Trent Dementia, a small charity based at Nottingham University working with people diagnosed with dementia. My role was to lead on an innovative project to facilitate the charity to design and deliver local networks of peer support for people living with dementia. Fundamental to such work is in developing meaningful relationships with people living with dementia. I have been fortunate in working directly with people for over 30 years as a social sector practitioner, a counsellor and a researcher and have been a staunch advocate of working directly, face to face, with people as the only way to build meaningful connections.
Starting with a core group of six people living with dementia, meeting monthly, the group members decided which area to start promoting the idea of peer led groups and offered open invitations to people living in those communities to share coffee, biscuits and information. In this way those who were interested began to meet more regularly in their local communities and the first groups gradually became established. The members of the peer support groups relish the opportunities peer support groups present; getting together and share experiences, sometimes weekly, sometimes monthly but, always in person. However, as COVID-19 became a stark reality it became clear that many people in the peer support network would be in lockdown for an unknown amount of time as the national approach to suppressing the spread of the virus. I, like so many others, had to quickly adapt to a completely virtual world of online interactions which, quite honestly, felt impossible. In comparison to my son and his friends who were au-fait with this world and shifted seamlessly into zoom, facetime, and online gaming to maintain their contact. I wondered how this might work for people living with dementia in the peer support groups who were expressing fear about what was happening to them in an already confusing world.
Despite my concerns and with little time to ponder as even before the need to lockdown was announced the first request for an online meeting came in. So, from week one we started facilitating one meeting; by week two we had three meetings. As the number of virtual meetings grew, they have been consistently attended to date enjoying attendance of between 12 and 15 members in each meeting. What has happened for me is a profound shift in appreciating how we can also experience a true sense of human connection even in this online space. An example of this I offer is in sharing video calls with the backdrop of our own homes has in some way further humanised us all and set us within a tangible and personal context. I am pleased to report that relationships not only survived but have continued to develop and many made anew. Each being in our own homes yet ‘together’ has allowed people to share aspects of their lives previously unseen. It is one thing for a group member to say they like gardening and completely another to be able to see their garden on screen. We have had the opportunity to look at models people have made, jigsaws they have completed or sewing projects half done. This is curious as in the face to face meeting format craft projects were previously met with disinterest often because of a wish to remain productive following their diagnosis and not to be sat in the corner of a room ‘sticking and pasting’ (quote). The ‘new normal’ for the peer support groups seems to embrace and share a person’s lived life. Communicating on screen with other members whilst sat in their garden, having a sandwich and a cup of coffee, and offering peer support with someone who is shielding alone have, at times, been a very moving experience. The virtual context has allowed members to strengthen their relationships with each other in other ways too, such as, sharing wedding or holiday photographs, describing, and sharing favourite walks. For me this has been the epitome of Maya Angelou’s – ‘We are all more alike than different’.
As someone who teaches ethics in social research, and so a staunch advocate of personal boundaries, this pandemic has given me a gift and an even deeper insight into my own life but also the complex lives of those I support. Unlike my son and his friends, our members may need weekly reminders on how to log in and use Zoom but, people living with dementia across the network are using it with very little support. They are able to voice their fears, raise questions and concerns from the safety of their own homes, and even engaging in craft projects with no fears about productivity or judgement.
Dr Jane Rowley
Twitter handle @janerowley02
Yesterday I was gardening in front of my house. Out of the corner of my eye, I noticed an older man walking on the pavement opposite. Not a neighbour, I thought, it must be someone out for their daily exercise. When he passed a second time, on the same side of the street as me, I looked up and recognised the man as one of the regular attenders at the Memory Café where I volunteer. He was lost and likely to be at risk. My partner got him a chair and a glass of water, while I looked up his home phone number. When I reached his wife she was about to phone the police, since he had been missing for an hour. He was two miles from home, and it was sheer coincidence that I saw him.
For seven weeks, this fit and active gentleman and his wife have been observing the lockdown restrictions. He needs constant surveillance. Although they go for walks, his energy is limitless. The day centres he used to attend are shut, so is the Memory Café. Before lockdown, this carer could rely on this weekly social event with other carers and on day care for two days a week. At present phone calls are the only substitute since this couple do not use the Internet. They and people in similar situations need practical, personalised help.
I think that people with dementia living in the community with carers need a step down from the present restrictions, but it has to take account of the real risks of Covid-19. For such households, it may be worth a small risk of contagion to try to prevent the bigger risk that strict lockdown presents to mental health. One approach is to limit the number of people outside the household who have contact with people who are at risk. This small group forms a bubble of mutual support. Ideally, each bubble is sealed, and the membership of a bubble could be restricted to people who are almost certain to be virus-free. Now, for example, after seven weeks of isolation, there is no reason why self-isolating people should not visit other self-isolating people, if they can get to them without taking public transport. I’ve noticed one elderly neighbour who lives alone is already doing this, popping into the home of her 92 year-old friend who also lives alone. It’s time to bring some common sense to how we live with the risks of Covid-19, and bubbles seem to be a practical next step.
The term ‘underserved populations’ is used frequently at the moment in relation to certain groups of people affected by dementia. But what do we actually mean when we talk of an underserved population? The main issue is about the challenge of delivering services to minority groups; which by definition means any group of people that is smaller than the larger general population. Minority group membership is often based on differences in observable characteristics or practices, such as ethnicity, race, religion, sexual orientation, or disability. Sociologically, being of member of such a minority group often implies that you may experience relative disadvantage as compared to members of the wider, dominant social group and as such they tend to lack power in society.
There has been much debate over the last decade in health and social care services as to how to refer to such groups of people affected by dementia. Terms like ‘hard-to-reach’ have been used; however, this term has been challenged with critics stating that actually many of the vulnerable and minority groups to which this term has been applied are actually very easy to reach. I also think this term implies that it is the minority groups’ responsibility to ensure they are more visible to services and thus partly their own fault they are hard-to-reach. More likely, the responsibility is deflected from the government and the responsibility rest with local health and social care services and for them to adapt to diversity within the populations that they serve.
A more recent term, and perhaps one that is perhaps more sensitive to minority groups, is where a group is considered to be ‘seldom heard’. In 2017 the National Dementia Action Alliance launched their campaign ‘From Seldom Heard to Seen & Heard’ to improve outcomes for people living with dementia and their carers who they argue come from a seldom heard group. For me, this raises the question of are these groups seldom heard or is it that they are seldom listened to by services?
So let’s move on to the term ‘underserved’. This a descriptor originates from the USA to include the economically disadvantaged, racial and ethnic minorities, the uninsured (as in health insurance), low-income children, older people, people who are homeless, and those with other chronic health conditions, including severe mental illness. What unites an underserved group are where they share certain characteristics, such as; poor access to health care services, barriers to accessing primary health care services or a lack of familiarity with the health care delivery system. Largely though such underserved populations bear the brunt of societal discriminatory and inequitable practices. Don’t get me wrong – I am a great advocate of the equalities agenda and laws. They have made a big difference in dementia care, as with other minority groups, with all of us being more aware of the need to avoid discrimination based simply on someone’s ‘differences’. Indeed, most public bodies are required to take account of the diverse nature of modern society with any consultation being socially inclusive. The increasing consultation with the patient and public populations to seek their views and experiences of health and social care services has been a success story of the recent decade.
However, the world is very different today when faced with a coronavirus pandemic. In a health crisis, such as this, a danger for underserved populations is not just the risk of contracting the virus but a re-emergence of discriminatory practices. At such times, there is a risk that underserved populations simply become viewed as un-deserved populations. In a pandemic, triage in access to care and treatment starts long before a person becomes ill with the disease in an attempt to plan resource management. The British Medical Association set out guidance to support doctors in making decisions about which patients get treatment where resources are limited, such as ventilators to coronavirus patient’s that have acute respiratory distress and also to ration limited equipment and prevent the NHS becoming overwhelmed. Such crises seem to force us into situations where we place greater value on younger healthier groups. For people with dementia, there is a difficult balance to strike between their entitlement to the best care against the increased risks to their health of admitting them to hospital and exposing them to the virus. However, are we actually seeing a situation where people with dementia are being discriminated against and clearly moving down the priority order of those people who are deemed ‘worth saving’? Has the equalities and anti-discrimination agenda hit a wall of fair-weather rhetoric for people with dementia? We have championed long and hard for people with dementia to be granted equal human value but we now see them again starting to fall towards the back of a very long queue.
In an unfortunate turn of events, my 85 year old mother’s first hospital admission in decades took place several weeks ago on the cusp of the coronavirus crisis. She fell over at home and broke her hip and as I was at her house at the time, I was able to call out the paramedics immediately. She has dementia and told them that she had incurred the injury in a skiing accident - in fact she had tripped over a chair! Following a long wait in A and E she was then admitted for surgery. As hospital visiting was suspended the following day, I have not seen or spoken to her since then. I am therefore totally reliant on the updates provided by staff, all of whom I know are doing the best job they can under difficult and unprecedented circumstances. By all accounts her journey has been an eventful one and helps to highlight some of the issues faced by people admitted to hospital during the pandemic, particularly those with dementia.
During her first week in hospital I was informed that she had tested positive for the coronavirus and was being transferred to a specialist ward to be treated for this. As around three quarters of those dying from the virus are over the age of 75, I feared the worse. However, after a few days she appeared to get over the main symptoms and was transferred back to the orthopaedic ward. Although this was obviously good news, I wondered what impact these relocations would be having on her mental and physical condition. Would she know where she was and why she was there, could she express her needs to unfamiliar hospital staff and would she find their masks and full protective clothing incomprehensible and upsetting? Also her temporary transferral to a coronavirus ward would have meant a break in her post-surgery rehabilitation which needs to be promptly provided in order to maximise its effectiveness.
In view of my concerns, I was pleased to hear that three weeks after her initial admission, she was going to be transferred to a local community hospital for further rehabilitation. I felt that this would provide a more peaceful setting where she would have the chance to become familiar with the environment and start to regain her mobility through sessions provided by the hospital physiotherapists. However, due presumably to pressure on bed spaces, she only stayed in this hospital for three nights and was moved yet again to take up a temporary care home placement arranged by the social services. The apparent rationale behind this placement was to give her time to recuperate and to give social workers time to carry out a full assessment before longer term plans were made. However, unfortunately this assessment cannot be carried out until the lockdown is over and there will be few (if any) opportunities for rehabilitation as therapists cannot currently visit the home.
In addition, due to the need for social distancing, the care home facilities and activities normally on offer are not now available to residents. After living a reasonably gregarious and independent life, this has left my mother confined to her room and without any of her pre-operative mobility. Furthermore, although it is reassuring to know that she is getting the care she needs, it also concerns me that this care could be further eroding any remaining skills and independence that she may have. Her mental state is particularly worrying and I wonder whether she will even know who I am when I finally get to visit. Obviously, there are technologies such as Facetime and Skype that would allow me to speak to her in the care home in order to address these issues. However, even if care staff were available to facilitate this, as she has very limited vision and panics when trying to speak into a mobile phone, I have not pursued this option. Instead, a new radio has been delivered to the care home, so at least she is able to listen to some music while she self-isolates in her room.
So while being admitted to hospital for emergency surgery under any circumstances can rarely be a positive experience, her problems have been significantly escalated by the fact that this admission took place during the coronavirus crisis. This is not only due to the fact that she caught the virus herself but also due to the rapid changes in care settings, her isolation within these settings and lapses in her post-operative rehabilitation. The fact that she has dementia has potentially compounded the impact of these issues. For, as a stable and stimulating care environment is important in promoting the wellbeing and orientation of people with dementia, these experiences could have made her confusion worse. Similar experiences will be shared by many other people with dementia during this pandemic. They also face a relatively high risk of catching the virus. Thus although dementia is, in itself, unlikely to increase this risk, behavioural factors such as the lack of awareness of the need for social distancing, increased age and other health conditions that often accompany dementia may increase the probability of getting it. Only time will tell the extent of this risk but it is clear that the repercussions of the pandemic on the lives of people with dementia and their carers will be apparent long after its immediate impact is over.
One of my challenges as a specialist physician was Huntington’s disease. To give you a picture, imagine 'Diane' [i] slumped in a wheelchair, stirred into speaking by something her husband has said about their 7 year old son, Will. Diane’s strong feelings are obvious but what she wants to say is not, because her speech is unclear and her body’s jerking movements make the wheelchair shudder. Huntington’s is a genetic condition and there is a one-in-two chance that Will will eventually develop problems like his mum’s. She could expect disorders of cognition and mood as well as involuntary movements, the best known of which is the irregular jerking called chorea [ii].
One of my challenges as a specialist physician was Huntington’s disease. To give you a picture, imagine 'Diane' [i] slumped in a wheelchair, stirred into speaking by something her husband has said about their 7 year old son, Will. Diane’s strong feelings are obvious but what she wants to say is not, because her speech is unclear and her body’s jerking movements make the wheelchair shudder. Huntington’s is a genetic condition and there is a one-in-two chance that Will will eventually develop problems like his mum’s. He could expect disorders of cognition and mood as well as involuntary movements, the best known of which is the irregular jerking called chorea [ii].
I want to reflect here on the patients I worked with in the hope of capturing something of their experience. What I am after is experience, not experiences: not a 'then-I-did-this’ narrative, but the mental and bodily qualities, in other words the phenomenology, of Huntington’s. Medical language has little to do with experience, as I’ve argued in a recent book [iii]. What, then, can a doctor say about his or her patient’s consciousness? Not much, but not nothing. Our bodies constrain what and how we feel, and the particular constraints of Huntington’s disease are worth thinking about. The one I will consider first is disordered movement. In subsequent pieces I reflect on two others, slowness of thinking and obsessive traits, before coming finally to the larger question of what it might be like, subjectively, to have these difficulties.
My specialist nursing colleagues and I met people like Diane in their houses, and in nursing homes, and in our clinics. The 'patient’ would often be restlessly silent, as though preoccupied with something other than our conversation, so that we often found ourselves talking around, rather than directly to, the person. I wondered then, and I still wonder, what lay behind our patients’ apparent inscrutability and what made it difficult to establish some kind of presence within their mental worlds.
I think we can be sure that people with Huntington’s have the same desire to communicate as any of us. Above is a sample from a journal (I feel able to publish them here because the person is not identifiable, 30 years have elapsed, and there was nothing secret about them at the time). The lower is several months after the upper page. Over this period, the person’s efforts to communicate seem to be outstripping the capacity to write. The journal shows the effect of abnormal movements on handwriting, which might give us a picture of a faulty TV in which 'noise’ (jerkiness) interferes with a 'signal’ (thoughts).
This simple model has been rejected by theorists of human communication and says little about the conversational efforts of someone affected by Huntington’s, where noise frequently evolves into a signal. The ghost of some meaningful expression often flits across the person’s face, sometimes fading but at other times becomes unmistakeably expressive, and a movement of the head or of the arm may either subside or else turn into a recognisable gesture, all of which makes it difficult to separate the means of communication from the message. Facial grimaces, head-nodding, shoulder shrugs and movements of the spine can be part of anyone’s communicative repertoire. In Huntington’s, similar movements are hallmarks of brain dysfunction. Should we, for that reason, dismiss them as meaningless?
The body speaks to me, and also through me. A cough is a symptom but also an utterance. It tells everyone I have a cold, it suggests that I am someone to avoid (chorea has the same effect, socially), and it can also be a conversational gambit, transmitting private messages such as 'Stop talking about that!’. In communicating with each other we use pathologies such as coughing together with facial expressions, bodily postures and limb movements, and we also resort to whatever images or objects the environment happens to contain (the floor, say; or a spoon; or a part of the body). Together, these are among the affordances of communication. I learned to use the word affordance in this way from James Gibson, a psychologist who studied perception and action [iv]. We can only expect to understand someone with Huntington’s if we attend carefully to the person’s affordances. It is difficult to notice what someone is trying to say when the body’s involuntary movements and awkward postures are interpreted purely as signs of disease, or when a lack of verbal fluency is interpreted simply as dementia. Effective communication requires imagination, patience and, above all, curiosity about that person’s experiences, ideas and feelings.
Dementia, if we want to call it that, can expose affordances that were not available to the person before the onset of symptoms. Some of the modes of expression that people with Huntington’s resort to have a tragi-comic dimension. One angry man used a mower to write c*** on the lawn. He had his reasons.
Notes
[i] 'Diane' and other characters I mention here are not identifiable individuals, but nothing in their stories is invented.
[ii] For some of the physical challenges of Huntington’s, and more, see: https://www.youtube.com/watch?v=U4BSZ4FlGRg&feature=youtu.be.
[iii] See Between Sickness and Health. The Landscape pf Illness and Wellness. Routledge, 2020. .
[iv] Gibson, JJ. The Ecological Approach to Visual Perception. Houghton Mifflin, 1979.
There will be large numbers of people with dementia as the population continues to age. Dementia is a progressive, irreversible neurodegenerative condition that greatly reduces life with one in three of the population expected to die with or from dementia. Historically dementia was regarded a mental illness and as such, care provision in the UK was provided through secondary mental health services. Over the last decade there has been a wide and growing acceptance that dementia is the result of various forms of brain diseases that culminate in brain damage, so not a mental illness. Similar numbers of people with dementia may also experience a co-morbid mental health condition, as in the general population. However, since dementia transitioned from the auspices of mental health service it has become homeless. Dementia now seems to fall between the ‘pavement slabs’ of various services and organisations. There are times during the life of a person with dementia where they require the services of mental health still; the process of gaining a diagnosis, treatment for other mental health conditions, such as depression. There will be times when there are social care needs, such as assessment for care services, day care, residential care, etc. However, there lacks continuity in which service is the identified lead organisation, who provides a consistent approach? Families affected by dementia often move fruitlessly between health and social care services in attempt to seek a tried and trusted pathway of care. Dementia is homeless.
A palliative approach
There is no current medical cure or treatment for dementia yet it has not traditionally been recognised as a life limiting condition and one that may benefit from a palliative care approach. It is now recognised and accepted, particularly in developed countries, that an integral part of care coordination and case management pathways for people with dementia should include end-of-life care. The European Association of Palliative Care (EAPC) published a consensus statement attempting to define the principles of practice of palliative care, which are to take a holistic approach, valuing autonomy of patients and their families, with a focus on dignity, a collaborative relationship between healthcare professionals, patients and their families, good communication, and to maintain the quality of life. More recently the EAPC sponsored a consensus study involving 64 experts from 23 European countries, including the UK, to provide the first definition of palliative care in dementia. Fifty-seven recommendations resulted covering eleven domains, with the aim of providing guidance for clinical practice, policy and research. The EAPC White paper presents healthcare professionals with a more tangible template for supporting families affected by dementia.
Commissioning palliative care in dementia
Access to palliative care for people with dementia has long been advocated by Dementia UK and Admiral Nursing, from the point of diagnosis of this life-limiting condition through to the end of life of the person with dementia and aftercare in bereavement support for family carers. Therefore, the person-centred philosophy of palliative care resonates with the often lengthy trajectory and heavy symptom burden of this terminal condition. Indeed, the National Institute for Clinical Excellence (NICE) guidance recommends the offer of flexible, needs-based palliative for families affected by dementia that takes into account how unpredictable dementia progression can be. In its overarching statement the NICE guidance also states that it is a commissioner’s duty to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities, yet access to palliative care for people with dementia and their families remains inequitable across the UK. While Dementia UK aims to negotiate the most inclusive approach when implementing the Admiral Nurse model, access to it ultimately depends on the host or commissioner of the service. It is encouraging to see a seed change in the hospice movement across the UK with a growing number recruiting Admiral Nurses to enable them to extend a hand to families affected by dementia who are struggling with a particularly fragmented health and social care services. Tom Kitwood, the guru of person-centred dementia care stove to inspire services to deliver and support care that was person centred. It would be a truly marvellous development in dementia care if it were to be embraced by the palliative care world – dementia would no longer be homeless but embraced within a field that has person centred care at its core.
Dr Karen Harrison Dening
Head of Research & Publications, Dementia UK
13 January 2020
Further reading
Harrison Dening, K. et al. (2018) Palliative care in dementia: a fragmented pathway? International Journal of Palliative Nursing. 24(12): 112-122.
Kitwood, T. (1997) Dementia reconsidered: The person comes first. Buckingham: Open University Press.
Radbruch, L. et al. (2009) White Paper on standards and norms for hospice and palliative care in Europe: part 1 Recommendations from the European Association for Palliative Care', European Journal of Palliative Care, 16 (6).
Dementia specialist Admiral Nurses are being asked more and more to support production teams of theatre, film and TV programmes on how best to portray dementia. The profile of dementia in the arts has risen sharply over the last decade; there is a growing number of fictional novels that give us a glimpse into what it might be like to have dementia. We have seen some favourite soap characters develop dementia for instance and there have been film portrayals of people with dementia. I have had the privilege of reading drafts of novels and film scripts and advising actors on the nuances of presenting an accurate yet sensitive portrayal of characters.
The most recent and most rewarding of these opportunities was in advising the lead actor and production crew of the making of the BBC’s new drama ‘Elizabeth is Missing.’ The request to support the production came as a result of Dementia UK’s growing national presence. Having already read ‘Elizabeth is Missing’ [1], this request sparked my interest, even more so when I learnt that the main character to play the person with dementia (Maud) was to be Oscar winning actor and former Labour MP, Glenda Jackson. I arranged to read the script and a meeting with Glenda and the production team was arranged. We discussed how and why Maud might have reacted to certain situations. I was amazed to find out that this film project had been the nugget of an idea and in the making before even the novel was published. From this point on though the team forged ahead and I was then invited to the films premiere in Mayfair on 27th November (an STV Productions, BBC One and BAFTA event).
The film and book have two main thrusts; it is essentially a ‘murder mystery’ but played out through the eyes of a person with dementia. It skilfully weaves us through the altered reality of a person with dementia as they grapple with the present day and the effects of living with dementia with the memories and emotions that call from their past. The character of Maud was probably one of the most honest and accurate portrayals of a person with dementia that I have seen. There was humour laced in at times which gave the character and context authenticity. There was no Hollywood glitz but a sense of ‘everydayness’ and a tangibility to her character that many families affected by dementia will be able to recognise and relate to.
Parts that stood out for me included the close bond that Maud had with her granddaughter. Often we consider the relationship between the person with dementia and their most direct carer, often a spouse or adult child. What we witnessed in this grandmother-granddaughter relationship was an unconditional acceptance and love with an empathy that was very moving. The second most memorable part was when Maud, sat at the bus stop, was approached by her daughter, Helen, but did not recognise her as such and the resulting conversation was one you would have expected her to have had with a stranger. Helen was aware that her mother had failed to recognise her and was very visibly distressed. Indeed, as Admiral Nurses we counsel many family members on this very upsetting loss of recognition. As Helen turned back to face her mother, Maud became immediately aware that it was in fact her daughter and became distraught that she had failed to recognise her. This was an incredibly touching and poignant part of the film.
I feel very proud and yet humbled at the same time to have played a part in this outstanding and sensitive portrayal of what it might be like to live with dementia. ‘Elizabeth is Missing’ is to be screened on BBC One on Sunday 8th December at 9pm. I hope that it is as well received by the viewing public and offers a valuable insight into the reality of a person living with dementia.
1. Healey, E (2014) Elizabeth is Missing. New York: Harper Collins.
