Alzheimer’s Disease International has been producing annual reports for over a decade and they provide a most valuable resource, with up to date worldwide figures on dementia and providing a welcome global perspective. Each report is themed, for example looking at the numbers of people with dementia or at the costs attributable to dementia. In 2021, ADI has gone back to the topic of diagnosis, which was last covered in 2010.
The report is something of a mammoth document at over 300 pages long, so not everyone is going to read every word. The executive summary is three and a half pages, so that’s more manageable, or there is an online slide presentation at https://www.alzint.org/u/WAR-Launch-Slides-2021-4.10.pdf, as well as which ADI is hosting a short series of webinars about the report.
The main authors of the report are a team from McGill University in Canada, led by Professor Serge Gauthier, who were commissioned by ADI. Data from the report are provided by (1) the results of a survey of clinicians (>1000), carers (>2000) and people with dementia (<200) who were asked about their attitudes towards and experiences of diagnosis; (2) a series of essays on diagnosis-related topics by invited experts; plus (3) ten personal testimonies written by people with dementia or relatives. Altogether there are about 75 contributions from around 200 authors, and these are organised in six sections, with a total of 25 chapters. The foreword is by Paola Barbarino, CEO of ADI, who quotes various figures and describes the growing challenges of dementia as a perfect storm. She discusses the importance of diagnosis, especially that it should be more widely available, prompter, and established earlier. She concludes that, for various reasons, the world is still in denial about dementia. The six sections that comprise the main report are: clinical assessment; laboratory tests; personal testimonies; formulation of diagnosis; particular circumstances; and the future of diagnosis. These mirror the patient’s journey through the diagnostic process. A strong message is that diagnostic tests for various types of dementia are becoming better established, and tests such as blood biomarkers for Alzheimer’s disease are likely to become routine. A consequence of this is that it can become possible to diagnose the pathological process of Alzheimer’s disease ahead of waiting for clinical symptoms of dementia to develop. In turn, this opens the prospect of earlier treatments; however, we need to be sure that diagnosis so early is accurate and that potential treatments actually work before we decide that we really can prevent dementia. Different readers will be attracted to different chapters. For example, personal testimonies are always moving, and it is good to see them here. I confess I haven’t read every chapter but I did look out the one about re-evaluation of diagnosis over time. This is a tricky issue for clinicians. The commonest problem that my colleagues and I encounter is where someone has been diagnosed as having dementia but, over the course of time, the condition has not progressed as might have been expected, or even may have improved. I know someone who has been on a cholinesterase inhibitor for over 20 years, so I don’t think they have Alzheimer’s disease. Someone else I know was re-diagnosed as having mild cognitive impairment (MCI) rather than dementia and felt embarrassed at having spoken at events as a person with a diagnosis. However, the ADI report doesn’t touch on this problem, unfortunately, and instead the authors are more concerned with shifts in labels between different types of less common neurological dementias, such as progressive supranuclear palsy and corticobasal degeneration. Overall, though, it is an impressive state-of-the art read. The essays are brief and well-referenced, so there’s a good source of material. I realise that it must have been a herculean feat of editing to get all the contributions on board and published for World Alzheimer’s Day, 21st September.
Dementia is certainly a growing social concern, and is increasingly discussed and portrayed in newspapers, government speeches, policy documents, films, books and more. Despite this, a lot of misunderstanding, fear and stigma still surrounds the experience of dementia, and so when it came to choosing a topic for my Masters dissertation, and later my PhD thesis, I wanted to explore the interaction of public conceptions with how dementia is represented. I’m particularly interested in how people living with dementia, and dementia more broadly, are represented in society through the words, format choices and images used. The importance of such representations is frequently overlooked, yet they have strong accumulative power, and can provide valuable insights into underlying attitudes and ideologies about dementia.
For instance, in a quick search for images of dementia, taking a look at the first ten pictures to appear indicates that the dominant view of dementia focuses on deterioration of a person, through decreasing brain function (see the pictures above). The idea seems to be that someone with dementia crumbles away. Consider how this makes you personally feel about dementia, and about others who live with it. Do presentations such as these help contribute to fear and stigma, and the consideration (and often treatment) of people with dementia as non-people?
As well as deterioration of self, a biomedical focus is also evident, displaying types of dementia, risk prevention strategies and a comparison of physical changes in the brain for a stroke and dementia. There are certainly no photographs of people with dementia enjoying life, spending time with family and engaging with their environment, despite the recent emphasis on the fact that people can live well with dementia. Suggestions for other search terms link dementia to hearing loss and memory loss, but also to depression, delirium and psychosis, further promoting a fear-inducing narrative of dementia, rather than, for instance, signalling avenues of support. These linguistic and visual choices not only reflect, but also help shape, the way we think about dementia – making them a valuable avenue for change, to reduce fear and stigma, and improve the experience that people can have of dementia.
For my Masters dissertation, I compared two short videos for different charity campaigns, Alzheimer Society’s Dementia Friends (https://www.youtube.com/watch?v=TuPWBlmD5Tk&t=11s), and Alzheimer’s Research UK’s Santa Forgot (https://www.youtube.com/watch?v=Y9pd6F7Wojk&t=8s), to consider how they both visually and linguistically represent dementia. Through interviews, I also investigated how the videos were received by members of the public, particularly how they reflected, reinforced and challenged the participants’ dementia perceptions. This was a bit like dipping my toe in the water, and raised as many questions as it answered about dementia representations and perceptions.
Building upon this, for my PhD, I hope to explore how dementia has been portrayed since 2012 to the British public, when the World Health Organisation made dementia a public health priority, and David Cameron challenged England to become world-leading in dementia research and care. How do politicians, governmental departments and non-profit organisations engage with popular perceptions of dementia? What relationship do they have to the presentations spread throughout the British press? What do members of the public, including people with dementia, think of some of the linguistic and visual portrayals in my study? And how can dementia representations be improved? These are some of the many questions I hold going into the first few weeks of my PhD, and I’m excited to find out where these questions will take me.
As dementia results from changes in the brain, it is unsurprising that people with dementia often have disrupted sleep patterns. Changes in sleep pattern may occur before a person has enough other symptoms to acquire a diagnosis of dementia. Previous research has shown that disrupted sleep patterns may occur several years before dementia becomes manifest.
A study that has just been published in the high profile journal Nature Communications by Sabia and colleagues explores the association of sleep duration in middle and old age with the incidence of dementia. This important study contributes to the existing literature in several ways. The authors have used data from the UK Whitehall II cohort – civil servants who were first interviewed between age 35 and 55 and then followed up for about 25 years. There were nearly 8000 participants with data on their self-reported sleep, of whom just over 500 had developed dementia by the end of the period being studied. Men and women with shorter sleep duration (6 hours a night or less) at the age of 50 or at the age of 60 had a higher rate of developing dementia than those who slept 7 hours per night. The findings for people sleeping 8 hours plus were less clear. Given that the mean age of dementia diagnosis was 77, then these changes occurred many years before the condition was diagnosed.
What this study adds is the large sample size, the full assessments and the long period of follow-up. The study has made repeated measures of sleep duration over the years. Although most of the sleep data were based on self-report, which can be unreliable, a small subset of participants did have objective sleep measures with an accelerometer and the findings were consistent with the rest of the observations. The study team were able to use NHS data to determine whether participants had eventually been diagnosed with dementia. While NHS data have their limitations, this method will correctly pick up the great majority of cases. Finally, the research team undertook several sensitivity analyses, that is analyses to discount other possible hypotheses; for example, they were able to establish that the effects of sleep on the future risk of dementia were not due to mental illness, such as depression or anxiety, as these also play havoc with sleep.
What’s the message for us all? Evidence of sleep disturbance can occur a long time before the onset of other clinical evidence of dementia. However, this study cannot establish cause and effect. Maybe it is simply a very early sign of the dementia that is to come, but it’s also quite likely that poor sleep is not good for the brain and leaves it vulnerable to neurodegenerative conditions like Alzheimer’s disease.
Turning off mobile phones and avoiding caffeine before bed are good habits to have as we already know the importance of good sleep on health more generally. However, however we would need further studies to know if longer sleep in itself could reduce the risk of dementia later in life.
I am currently a final year student at the University of Nottingham studying Neuroscience. One of the major influences on my life that encouraged me to study the brain was my Grandad, who was diagnosed with Alzheimer’s Disease when I was incredibly young. I became increasingly interested in the mechanisms of the brain and how they may contribute to my Grandfather’s diagnosis. I was incredibly excited at the beginning of my second year when I enrolled onto a module called ‘Neurobiology of Disease’. During the module, I learnt about a variety of medical conditions, from ADHD to epilepsy and of course Alzheimer’s Disease.
As someone who has a close family member with Alzheimer’s, I found it somewhat comforting to learn that scientists and researchers have an impressively strong understanding of the symptoms of Alzheimer’s as well as it’s underpinning mechanisms.
We learnt that the main indicator of Alzheimer’s Disease is the presence of ‘Extracellular Amyloid Plaques’ in the brain. These are collections of the protein called Amyloid that are toxic to the brain and can disrupt the mechanisms by which cells in the brain are able to communicate with each other, they can also cause the loss of brain cells in a process called brain atrophy.
Brain atrophy in the early stages of Alzheimer’s Disease, takes place in an area of the brain called the hippocampus. The hippocampus region of the brain is vital for memories and so by losing cells in this region forgetfulness can often incur. This loss of cells can progress causing the symptoms of Alzheimer’s appear increasingly severe and effect behaviour more and more.
The loss of cells as a reason for many symptoms of Alzheimer’s Disease provides researchers and scientists with a clear target for treatment. Brain cells can be lost for a variety of reasons, but with the Amyloid Plaques indicators, we know that in Alzheimer’s a big reason for cell loss is a fault in how the brain breaks down the proteins that form the Amyloid Plaques. This protein is referred to as APP and is present in every brain cell where it is normally used for repairing the cell it inhabits. When APP is cut into smaller pieces by certain sites of a cell it has a protective role, but when the APP is metabolised by other sites, known to scientists as the beta-secretase, the APP and this site form Amyloid. This Amyloid is what leaves the cells in the brain vulnerable, increases toxicity and disrupts the balance of chemicals in the cells.
Although this may appear a potentially daunting idea, it does provide hope to those researching Alzheimer’s Disease. With these biomarkers identified, diagnosis can occur much sooner and targeting the sites on cells that combine with APP to form these amyloid plaques is a clear target that scientists are concentrating their work on.
I first became conscious of the concept of planning ahead for the end-of-life in the early 1990’s when I became a community psychiatric nurse (CPN) supporting families affected by dementia. Over my 6 years as a CPN I was involved with several people with dementia and their family carers who went on to write down their wishes for care as their future unfolded with dementia. This was at a time when ‘advance care planning’ was not the language used but more that of a ‘living will’. During this time, we were in the midst of the HIV and AIDS crisis and to the fore of this was the Terrance Higgins Trust (THT), an international charity, who were instrumental in developing one of the first Living Will’s which was probably one of the first advance care planning templates for end-of-life situations for this population. In the media we witnessed the pain and distress brought about by people with AIDS talking about the knowledge that they were dying and how they wanted to have some control over their deaths and how to support their loved ones to understand their last wishes.
There were several families affected by dementia that have a very strong place in my memory of those years and they were those where I worked closely with them to support their thinking and of planning the care they would wish for in the future as their dementia unfolded and progressed. The majority of those that wished to explore this wanted to have a written plan in case they needed to inform others, such as their wider families, GPs or hospital staff, should they need care. I contacted the THT and sought permission to use their living will template with the families I was working with. They were extremely generous and provided me with a whole pack of blank documents. Computers and the internet were far into the future at this stage so each of the families used their ‘hard copy’ of their living will to pencil in their thoughts. We would take several sessions to talk through each section, after which they would change the pencil markings for pen and ink; such was the value they placed on the process and the document.
What was of equal value was for them to engage in such a process required me to provide information and advice about what their future might hold; this was an area that was little touched on in those days as, working in secondary mental health services, we did not care for people with dementia at the end-of-life. I suppose these days we might talk with the family about the prognosis as the dementia progresses and what the symptom burden may be should a person live into the advanced stages of the condition. On reflection, I think I must have been quite brave as few mental health clinicians at that time acknowledged dementia was a life-limiting condition or that end-of-life care was the remit of secondary mental health services. I had one couple on my caseload where the wife had a diagnosis of dementia which was in its moderate stages. Her husband was her main carer as they had no children or close family members for him to rely on for support. The carer was also very frail and had several chronic and debilitating illnesses. As can be quite typical of older male carers, they often take on the sole responsibility of caring for their wives and find it difficult to allow care services to undertake what they feel, is their job. He had refused all offers of external care for his wife. However, he also found it very difficult to accept the diagnosis of dementia and felt that there must be something that could be done. As a nurse I was very familiar in working with families in negotiating their day to day plans for care. I acknowledged with him that we would take things at their pace and work with them to plan how they might think about both of their future needs. He was quite pleased that I was not there to tell him what do but that I would be guided by and work with their wishes. He had not experienced this sense of control before which he found more palatable than a professional coming in and telling them what they thought was the solution. It became clear that no-one had explained at the point of diagnosis what dementia was and what they might expect as the condition progressed. After we had started having these conversation’s I introduced the notion of planning ahead and in documenting wishes and preferences for future care. It evolved that his main concern was that his wife would outlive him, given his poor health, and was concerned about who would care for her if he was not around.
We tried to engage his wife in the conversations and planning ahead but she had no insight into her condition and was content in her day to day life, having no realisation of her diagnosis or what the future might hold. She lived in the moment, which is very common in people with dementia. So the plan was very much based upon what he felt her wishes may have been if she were able to express them herself.
As with this couple, I would often work with families over several sessions to help them to consider their wishes and preferences for end-of-life. After some time, I decided that I would develop my own advance care plan and document my own wishes and preferences for palliative and end-of-life care. My sons, who were in their early teenage years at the time, did not want to even contemplate life without me but understood that this document was there should the need arise. As time has gone on, I have updated it, adapted it and added things as they emerge or evidence changes. These early experiences of ACP were a very real driver for the research focus of my PhD studies to better understand how we can ensure people with dementia and their family carers have a voice in their ACP and end of life. As professionals working with families affected by dementia, we need to always be conscious that the process, especially from the perspective of the person with the diagnosis of dementia, is as inclusive as possible. It was practice back then that clinicians would often turn to the family member in negotiating care plans which may leave us uncertain as to how closely this reflects those of the person with dementia. We now recognise that we should offer ACP as soon after diagnosis as possible, to maximise on the capacity of the person diagnosed with dementia to fully engage.
My own ACP was driven by an emotional response to these early professional experiences which then also led to my research interests in this field. The question I ask to my fellow researchers in the field of ACP is; how many of you have your own ACP? How many of you have walked this walk yourselves? It is essential that if we are to talk the talk and walk the walk we need to have considered our own ACP to have as good an understanding as possible of what we are asking of participants.
Dr Karen Harrison Dening, Head of Research & Publications, Dementia UK.
My father was diagnosed with Alzheimer’s disease when I was 10, so I have always had some awareness of the condition. From an early age I was aware that he wouldn’t be around as I grew up and as time passed, the condition worsened and things changed in the family but I never remember a single point when grief started to set in. I didn’t, and to an extent still don’t, feel entitled to a full grieving process, because in complete honesty I have very limited memories of my dad as the person he was before his disease. The process of losing him for my family was extremely drawn out; little by little chipping away at the person we knew so insidiously that it went unnoticed day to day apart from the occasional reminder (for example one day my dad filling up the car with the wrong fuel) of what was happening and worse its irreversibility.
As time went my dad became a new person, dependent and helpless and I came to dread going to see him when he was moved into a nursing home in case he had forgotten me. But all through it, I never noticed a single point in time when I lost my father, even when he died in my first year of university, in truth it didn’t feel like much had changed. To anyone who asked I said it had been a long time coming and there certainly wasn’t any shock to it.
I’m not sure if it’s a good thing or a bad thing that dementia takes a person away so slowly. I’ve thought about it a lot and I have to admit I don’t know how I’d cope with what I’ve dubbed “real grief” if I were to lose someone I loved suddenly and unexpectedly. Because the disease progressed for over 8 years, I was ready for what I always knew would be the outcome. As my understanding of the condition deepened, I was less and less excited about news articles of potential cures as I knew the damage was permanent; the physical structure of the brain that allows us to make memories was damaged. Dementia isn’t something that removes a chunk of memory then goes away again like some kind of anterograde amnesia. It not only kills but destroys, wiping out most of what makes someone you love the person they are, with currently no hope of reversal and little of slowing it down. Therefore, mercifully I was ready for adult life without a father figure. But on the other hand, that is a very long time to have to watch dementia unfold. Being a primary relative, there was no way to escape from it. Also, the impact it has on the individual themselves is painfully clear; to be so aware of what was happening must have been terrifying, especially given my dad worked with people who suffered from degenerative diseases.
I think I will always be slightly confused as to how to define my experience with the disease, one of the most difficult questions I’ve ever been asked was “What is it like to lose a parent?” and really I have no idea how to describe it and failed miserably to do so when asked. The question was possibly made more difficult by the fact that I couldn’t say for sure when I actually lost my parent, and it sounds harsh but hopefully someone will understand when I say I didn’t notice. It is so gradual and so silent that one day you realise that the person is gone and you can’t identify the last time you spoke to them as the person you remember them being, yet some recognisable traits remain. It doesn’t just change their memory of you, but yours of them in the subtlest of ways.
Returning to work in Health and Social Care after bearing and shepherding four children to maturity, including four and a half years living in the far east, her role was to help to make people’s lives after hospitalisation as comfortable as the system and their finances allowed. For people who could go back home or could afford care it was straightforward. She made it clear for herself she would choose to die at home.
Retirement came after those gruelling years of endeavour. After a few days away, a surprise party in the garden with a marquee on the lawn, a jazz quartet and a pig roast and friends from present and past, a new horizon. The freedom to travel when she liked with a partially retired husband to conferences and overseas assignments and overseas relatives. Now was the opportunity to take extended trips: a long trek in the mountains of Nepal; touring the USA from coast to coast; walking the trails and footpaths of Britain; the blue ridge mountains of Virginia; the blue mountains of Australia and no need to worry about that case load when getting back home.
But things started to change: the Christmas party where she was missing the crack, as eldest son said, “Mum see the holes in the wall behind you where the missed arrows of our wit terminated”; walking with the Ramblers she had more than the usual number of stumbles; repeatedly forgetting her walking stick after the stop and no longer talking with other ramblers. On a couple of occasions she lost her way: could not find her way out of a shopping complex in Manchester while husband was lecturing; losing her way from the toilet at Heathrow needing to be helped by a security guard back to the waiting area.
Travel was now limited, and domestic activities delegated. Annual visits from expatriate daughter lead to concerns about changes noticed from year to year and resulted in, almost forced, visits to see the doctor initially resulting in reassurances of “it’s probably slight depression that comes with older people, take these”. Later, referrals for tests and scans revealed the dreaded diagnosis, Alzheimer’s Disease. Seemingly she was unaware of her condition and pleased to be comfortable and waited upon.
Over the following decade the ability to communicate verbally diminished to the point where she used only buzzwords, phrases, and made-up words. Finally, she lost the total ability to speak. Walking became less adventurous: she forgot how to negotiate stiles; rough surfaces became hazardous and so we only walked on paved surfaces, for shorter distances, and with many pauses, eventually resorting to a wheelchair.
Bodily functions became uncontrollable: eating was only possible with constant attention; washing and dressing needed full assistance. Difficulties in swallowing limited the form and frequency of feeding. Control of motor functions lead to being unable to stand and being hoisted from bed to bathroom to chair and back to bed. Finally, she became totally bedridden. Loss of ability to eat that, based on a previously decided medical decision not to force-feed, led in a few days, one grey November dawn, to a peaceful death at home in her own bed.
"Write down what we need, we are having a lot of guests over – we need a sack of rice, make sure you get the good one!" said my grandad.
“No problem,” I said.
"I am not talking to you, silly, I am talking to your dad." My grandfather laughed as he weakly pointed towards my 'dad' whom he confused with one of the machines surrounding his hospital bed. By that time, his dementia had progressed significantly, though his hospitalisation had nothing to do with dementia at all.
Although this snippet of conversation seemed odd and even though, of course, there were no guests coming over – I knew that he was absolutely and undeniably himself at that moment.
Evidently, personality changes are often seen in people living with dementia, but one must not forget that human beings are animals of habit and studies have shown that in dementia long-term memory remains often intact, despite the loss of short-term memory. How is that possible?
A lot of times the underlying cause for dementia affects the hippocampus inside the brain and since researchers pointed out that most of the short-term memory is based within the hippocampus whereas long-term memory can be found in the cortex of the brain, it makes perfect sense that long-term habits and long-term memory define the personality in these cases.
Interestingly, my grandfather held get-togethers since his teenage years and was always in charge of organising and planning the logistics, as well as the meals. The fact that he might have been confused about the reality of where he was during our above-mentioned conversation, does not warrant the assumption that he was confused about everything and thus not to be taken seriously.
In fact, studies suggest that it is crucial to engage positively and patiently instead of undermining the intelligence or correcting wrong statements of people living with dementia. Meaning, respecting and upholding the dignity of people with dementia is the best and most efficient way to create a healthy and comfortable environment. It is especially important to remember that even though, people with dementia often return to their childhood memories or early years, it does not mean that people who communicate or deal with them should infantilise them or ignore their input or diminish their thoughts and words.
Experiencing my grandad living with dementia has taught me that comparing people with dementia to children is wrong, my grandfather was a child when he was a child, then he grew up, he grew older and at some point he adapted to a life with dementia. Ultimately this means that all his achievements and all his growing up and all his wisdom was within him, right down to his very last moment and beyond. Living with dementia does not define a human being, but I strongly believe that how we, as people and a society, respect the dignity of people with dementia, does indeed define us.
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.
