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.
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.
Unpaid carers are still the mainstay of support for people with dementia in the UK. Research spanning several decades, perhaps even half a century, describes the nature of their day to day lives, the financial costs to their pockets, their personal costs, such as distress, physical and psychological burden.
There has been research that has developed many tools and scales developed to measure much of this for professionals to use when assessing a family’s needs, but – yes there is a but.
There is still a lack of consistency in what support and services carers of people with dementia can even hope for, let alone expect. Services for families affected by dementia and their commissioning is still very much a post-code lottery, or perhaps more so, dependent upon individuals within any locality that really do want to improve care for this growing group of people.
Roy Lilley, in his recent column for NHS Managers (https://ihm.org.uk/nhsmanagers-net/), outlined the issues very well but there are several points I would like to add.
Now many of you might not read further given that I work for Dementia UK and promote Admiral Nursing as a solution to commissioner’s problems; you might say, ‘well she would say that wouldn’t she’. But hear me out.
Admiral Nursing is the only specialist nursing service that specifically focuses on supporting such carers, but it is criticised for the lack of sound evidence of its effectiveness, cost benefits, and relationships to other health and social care services is limited.
However, what do we regard as sound evidence? As a model of specialist nursing it has no more and no less evidence for its effectiveness than specialist nursing models for other conditions, such as, multiple sclerosis (MS), Parkinson’s disease, motor neurone disease.
However, in dementia care there is a belief that what families affected by dementia need is a dementia friend or a dementia buddy to signpost them to services and supports available.
If you were diagnosed with MS would you want an MS friend to help you to adjust to your diagnosis, help you navigate through the mine field of social and health care, advise you on symptoms and their management, support your families through tough times? Probably not.
Similarly if diagnosed with cancer, would you want a cancer friend or would you want a Macmillan Nurse?
You would want the most skilled and effective support available – I would. So why should we expect that families affected by dementia would want any less – they often have to settle for what there is.
We have seen a growth in a variety of roles: dementia friends, dementia navigators, dementia buddies but there is also scant evidence for the benefits of these roles too.
Dementia UK rigorously evaluate all new and existing Admiral Nursing services and have generated valuable evidence and data that suggests positive outcomes and impact of the model (see Dementia UK website: https://www.dementiauk.org/).
Admiral Nurses, where commissioned, are success in working with the most complex cases. They work predominantly with older carers and vulnerable families who care for the person with dementia; these carers are often heavily involved in caring activity, fail often to recognise their own physical and psychological needs and who may be at risk.
Roy states that Admiral Nursing does not go ‘deep enough’ but if commissioned appropriately it does through the process of case management of families affected by dementia. And that is the rub – IF commissioned appropriately. Unfortunately health and social care commissioning is far from integrated these days meaning that the trajectory of conditions such as dementia are becoming more fragmented than ever before. Effective case management requires that the service is commissioned from the outset – diagnosis – and means the Admiral Nurse can work with a family throughout the course of the disease and then after death, in supporting family carers to ‘pick up their lives again’.
Roy made reference to the midwifery approach as an analogy for a process that may work for dementia yet then goes on to say that we should not medicalise dementia.
Dementia is currently ‘homeless’ – no longer aligned with mental health – quite rightly – but does not fit squarely in neurology (albeit its cause being brain diseases!), not fully a health or social care issue (moving in and out of each as the human condition often does); so where does that leave it when viewed from the skewed lens of the commissioner?
Admiral Nursing case management navigates families through services dependent upon their collective needs. Admiral Nurses are seen to be too expensive in dementia care but indeed our cost per unit probably equates to a midwife!
Society values children, so worthwhile the investment of a skilled nurse – why do we not equally value older people? Admiral Nursing can go as ‘deep’ as any commissioner(s) chooses – deep enough to really make a difference.
Following the ‘Cumulative Caring Crises’ that I posted about recently we have now accepted a respite care bed for my dad at the lovely residential home near me. My sister travelled over from France especially to bring dad up to Nottingham following his hospital appointment to check the progress of his bladder cancer. We are not mentioning the ‘L’ (Long-Term) word – just giving him time to settle and benefit from the attention, help and kindness of the staff.
It is hard and sad to see him alternating between being unsure and asking about going home, and being settled and enjoying a meal out with us and a walk by the canal. The home is busy and colourful – something that dad is not used to but that results from their caring, hands-on approach. My sister described it as ‘like Tracy Beaker’s orphanage – all bright colours and busyness’!
I feel too emotional to report in depth, but wanted to share the image below. The home has ‘Memory Boxes’ outside each bedroom where residents can display photos and objects that remind them of people that are important to them, or show a little about their tastes, hobbies and life. It is wonderful to walk along the corridor of bedrooms past model sports cars, or Forest shirts and football paraphernalia, or faded sepia photos of childhood days with mum or dad.
So I got out my felt-tips and produced a ‘Best Dad’ image with a steam train and mounted a photo of dad with his three daughters below. I hope it helps him find his room and remember that we love him, although I think he will respond more to the idea of steam and a good chug-chug sound!
I wrote about apathy for DDD in 2015* but the topic is still important and even featured in today’s Daily Mail!** This leads me to pick up the quill again:
Apathy is a common symptom throughout the course of dementia. It can also be associated with many other types of brain disease. By its nature it can be easily overlooked and hence its importance has been underestimated until recently. People have perhaps been more interested in looking at more visible changes in behaviour, such as agitation or aggressive behaviour.
A recent paper, from researchers in Holland, is quite correct to make a distinction between apathy and depression. The two may occur at the same time, so that apathy is often a symptom of being depressed and people with apathy can of course become depressed. But they have a different neurological basis and different courses. For example, apathy does not respond especially well to treatment with antidepressant medication.
The Dutch study was conducted with nursing home residents and therefore the authors were interested in the effects of apathy on mortality. However, our research and that of others shows that apathy can arise any time during the course of dementia. It’s not just a problem with dementia in care homes.
Apathy is extraordinarily frustrating for families and carers, since it appears that the person with dementia is perfectly able to do things (make a cup of tea, turn the TV on and off, or change their clothing) but instead they just sit there and do….nothing or very little. Often, carers will interpret this as being due to wilfulness or to gain attention, but actually the person has a problem with initiating actions. In technical language, they have a problem with executive functioning – or, as I often explain this to relatives, it’s like the engine just won’t start.
My colleague, Rianne van der Linde, did her PhD looking at the course of behaviour changes in dementia. We looked both at the published literature and also data from the MRC funded Cognitive Function and Ageing Study (CFAS) and we were struck by just how prevalent and persistent apathy was. For example, once apathy had occurred, two-thirds of people still had it 12 months later. And we found that, even with a sample of people living mainly in the community that people with apathy were 3 times more likely to die than those who didn’t have the symptom. That’s certainly consistent with the findings in the paper by Johanna Nijsten and her colleagues.
What’s the mechanism by which apathy leads to death? One factor is that apathy reflects damage to the fronto-striatal circuits in the brain, so if you have apathy and dementia, then you have evidence of brain damage in different areas of the brain. This is borne out by people with apathy and dementia having more severe cognitive and more severe functional impairment than those who don’t have apathy. The second factor is that if you are apathetic, you don’t move around as much so you are at more risk from the consequences of being sedentary, e.g. losing mobility, developing pressure areas, urinary and respiratory infections, circulatory problems, and so forth. The combination of these things is likely to shorten your life expectancy.
In summary, death results from having (a) more extensive brain damage and (b) being sedentary and suffering the consequences. That suggests to me that someone should do a clinical trial of measures to make people with apathy more active, or maybe they are already planning to do so.
*Link to Tom's previous blog on apathy: https://idea.nottingham.ac.uk/blogs/posts/apathy
**Link to the Mail article: http://www.dailymail.co.uk/health/article-4773340/Study-finds-elderly-life-care-homes.html
I manage Woodvale, an Extra Care Scheme that provides assured tenancies and services designed to help people aged 55 years and over to live as independently as possible in their own homes. About eighteen months ago I was asked by a group of customers at our monthly meeting why the communal kitchen and dining room weren’t being utilised to their full potential; “good question” I thought. The scheme was opened in 1989 and it has been through a lot of changes within this time. Some of the service users remember the “good old times”, when with a brigade of 4 kitchen staff a hot, 3-course meal was provided to all 53 residents, 7 days a week, 52 weeks a year.
The first time I heard about Super Kitchen was from a small number of service users, who used to go to the local community centre in Bilborough for a lunch together, for the very reasonable price of £2.50. Super Kitchens cook up surplus food from retailers that would normally go to landfill. The unpredictable provisions are delivered fortnightly by volunteers. One day a tenant asked me if they could leave some flyers advertising the Monday Super Kitchen in the scheme. I got to thinking, maybe there is an opportunity here? I wondered if they could prepare and cook and a meal at the centre and deliver it to our scheme but, for a variety of reasons, could not set up a joint venture with them.
A few weeks later a colleague, Tom, was promoting a new partnership with Super Kitchen, at our community centre Hill View in St Ann’s, Nottingham. So I invited Tom to Woodvale to show him the facilities we had here and discuss the possibility of opening our own Super Kitchen. We then applied to Metropolitan for the funding for the annual subscription for a Super Kitchen. The subscription (about £2,000) includes promotional flyers, banners and posters, web advertising, food hygiene training, and an annual supply of food. Tom and I met with the tenants and a number agreed to volunteer their time and to support the project.
On 22nd November 2016, we launched the first Super Kitchen at Woodvale with a 3 course meal of mushroom soup, roast chicken or sausages in onion gravy, served with seasonal vegetables and fruit crumble or profiteroles for pudding. We served 40 people; 23 service users and 17 invited guests, staff and volunteers. Since November we have been serving an average of 25 cooked meals every Tuesday lunchtime (and one Thursday evening meal per month) to our service users, their families and friends and the local community. We also have voluntary input from Central College Nottingham students on a course for life and work skills.
This project was always about people coming together at mealtimes to enjoy a great, affordable, planet- saving meal that comes with a side order of community, connection and conversation. Although it was never about making money, we have in the last 7 months raised enough money to pay the Super Kitchen subscription for the coming year.
For more information about Super Kitchen, please visit the organisation's website: http://superkitchen.org/find-super-kitchen/
The situation with my lovely dad is becoming untenable. ‘Becoming’ is probably rather too tame a word for it – things have changed rapidly over the last nine months and I feel like we are dealing with a runaway steam train (dad would love that analogy) about to hit the buffers. The problem is: how much track do we have left before we hit them?
Christmas was Christmas, but after that it was downhill all the way.
February saw a return of the bladder cancer that has now been treated three times, but this new growth is a different type that would normally require nine sessions of chemotherapy on a weekly basis. Simply taking a biopsy resulted in a rampant infection and an emergency hospital admission, followed by a twelve-day inpatient stay. Continence problems are becoming more frequent. The urology team feel that dad is too frail and susceptible to further infections to be worth risking this treatment. We are sitting on a tumour-timebomb, and when it roots down it could spread quickly.
Dad’s eyesight has also deteriorated badly (he is registered partially-sighted) and he can no longer see to use a bank-card machine properly or to write a legible signature on a cheque. With me being the nearest relative (at 200 miles distant) it is difficult to put financial safeguards in place yet give him any independence. He was also sadly targeted by fraudsters in June, and was persuaded to go to his bank for a very large sum of money. Fortunately the bank were vigilant and rang me as one of the Power of Attorneys, and another emergency trip down south to provide support and to secure dad and the house was necessary.
The third strand of dad’s needs he classifies as ‘confused-dot-com’! If he was capable of making purchases the advertising chaps and chapesses would be really pleased with themselves. Unfortunately their witty slogans simply serve as a humorous way for us to talk about his Alzheimers without using the ‘D’ word. And the confusion has certainly got a lot worse. Just last week we had all three daughters and a friend of dad’s from church and the local vicar all searching for his missing dog only to find that she’d spent the day at her normal dog-grooming appointment. Phone calls and emails were sent from as far afield as Australia and southern France, dog wardens were consulted, and walking routes and the local footpaths searched. It turns out that the carer handed the dog over to the groomers and either didn’t tell dad or he didn’t remember – he simply told us all that she was missing. When she was returned later he couldn’t work out how she had got back.
This brings us to the fourth strand of the problem – the care agency is no longer to able to provide the help that we ask for. Firstly, they simply don’t have enough carers on their books to cover the visits that we have requested, and dad regularly has to get up without help or put together a meal (usually cold, and sometimes out-of-date) if the carer is scheduled too late for his mealtime. Secondly, the communication between the administration side and the carers is somewhat chaotic and so far this has meant that dad missed a flu jab appointment and two chiropody ones. These are the ones we know about. In addition the finance department cannot sort out their invoicing and cashed two payments for the same invoice on one occasion.
Some of these problems are typical of care packages and others may relate to the agency we use, but they are not easy to identify or handle from between 200 and 3,000 miles away. Dad – here I can’t resist some writerly lingo – is an ‘unreliable narrator’, and it is hard to ascertain what is happening and why. It is time, surely, to consider other options.
So we are. We have interviewed a live-in care agency, spoken to other agencies about adding in care visits alongside our existing one, and, finally and in desperation, talked to the wonderful residential home that is local to me. They have previously offered a respite care bed but dad chose not to try it out. But maybe the winds of change are blowing as, for the first time ever, dad recently asked a question about what would happen (to the dog, of course) if he needed residential care. I think, deep down, even dad feels that sense of floundering.
It is so, so, sad. I think I am writing this just to clear the whole, unhappy, situation out of my head. We have tried to gently help dad understand that, what with the ‘lump in his bladder’ (the ‘C’ word is another letter-word that he cannot remember or accept applies to him) and the advancing nature of ‘confused-dot-com’, he maybe needs more care that we can arrange at home.
The tracks are coming to an end, and we would like to bring that train into the station safely if it is at all possible…
This month, Professor Cathy Greenblat has been visiting the TAnDem Arts and Dementia Doctoral Training Centre. Cathy, a former Professor of Sociology, has engaged in photographic projects around aging, dementia and end of life care. Her work has become well known with people working in the dementia field. Her published work “Love, Loss and Laughter: Seeing Alzheimer’s Differently” has been used to highlight loving care and aims to reduce the fear and stigma that surrounds dementia.
Cathy’s work is perceived as aesthetic and instructive, challenging stereotypical views of people with dementia. Rather than stock photographs of ‘wrinkly hands’, her work focuses on peoples’ remaining skills and abilities, that are all too often underestimated. The aim of Cathy’s visit was to document some of the work that the TAnDem students have been involved in, providing a photographic legacy for the students and the arts communities that we have been working with. This week Cathy visited Nottingham to photograph two creative arts sessions the TAnDem students have been involved in.
The “Press Here” digital project was the focus of Monday morning’s creative session. Artist Graham Elstone conducted a workshop at Radford Day Centre with participants and volunteers as part of the Imagine Arts programme. Imagine is a three year programme funded by the Arts Council and the Baring Foundation arts and older people in care fund. This strand of work explores how digital arts can become accessible for older people through experimentation with the arts. It aims to engage older people with new technologies and challenge stereotypes that digital arts are not exclusively for younger people.
‘Love’ was the theme of the session; participants were asked to brainstorm things they loved guided by their senses. Through discussions some common themes became apparent: the smell of coffee in the morning, listening to music, the sand between your toes, the smell and sounds of new born babies. Participants then sketched their favourite items and once happy with the design cut it out to form a silhouette; whilst Cathy moved around the room watching the artists at work.
The afternoon saw us travel to a care home in Beeston. Here, Cathy was given a tour of the facility and the opportunity to photograph a music session facilitated by care home personnel. A group of nine residents and accompanying visitors were enticed into singing favourite tunes whilst accompanying along on tambourines and maracas. Music is known to be a powerful medium, particularly for those living with dementia. Despite the heat which accompanied the glorious afternoon sun, residents’ eyes lit up, connections were formed and we all had smiles on our faces.
Throughout both sessions, I felt that I was looking through a new ‘lens’. What would I look for if I was photographing this group? Does that accurately portray what is happening? To me, the most interesting moments were perhaps not activities themselves, but the interactions between the people present in the group. A member of staff playing piano whilst a resident rests her hands on his shoulder and sings with him. Residents encouraging each other to participate in activities. Laughter, playfulness, joy.
As students researching the arts and dementia, we are often grappling with how we measure the ‘in the moment’ responses to creative arts experiences. Cathy’s visit has left me with some questions to ponder: how can the camera be added to the researcher ‘tool-kit’? How authentic would this ‘visual evidence’ be? In what way can we use photographs to disseminate our research? After all, the saying is “a picture speaks a thousand words”.
You can find out more about Cathy’s work on her website: http://www.cathygreenblat.com/
This is a tale of woe! For want of a Health and Welfare Lasting Power of Attorney (POA) our family find ourselves with a Catch 22 dilemma in getting services for my dad. We are going in circles, believe me, we are going in circles! Please read, and take note, all you carers out there…
My sisters and I have long held an Enduring Power of Attorney, and later a Property and Finance Lasting Power of Attorney which superseded it. Thereby, sadly, lie many other woeful tales of banks, and companies, and even our own beloved (?) Department of Work and Pensions who, at various times, have been disinclined to act on this legally binding document. No, said our solicitor when we set this up (unwisely as it turns out), I don’t think you will also need the Health and Welfare one. Our solicitor must be the only legal person I know who does not take up the opportunity to unashamedly tout for extra work.
Why, you ask me, with your wide experience of working in the field of mental health and social care, did you listen to her? Why risk it?
I suppose the answer is twofold. Firstly, preoccupation with dad’s immediate needs and getting his finances sorted prevented me from thinking it through clearly. Secondly, my own experience is that the teams I worked in were very keen and pro-active in trying to involve family members and carers in a person’s care – of course we obtained the appropriate permissions to do so, and the individual who we were providing services to was the focus of our provision, but, unless there was a conflict of interest, having the family involved really helped us to give a better quality of service.
Does this sound obvious? Clearly not everyone agrees. No less than four different health/social care services or agencies involved in my father’s care have either:
a) refused to provide a service, or
b) queried a request or a care decision, because a Health and Welfare POA is not in place.
Recently I discussed this with my father’s solicitor. He was frustrated, but not surprised, at the problems we were experiencing. He pointed out that what the services are doing is completely contradictory – on the one hand they will take only dad’s instructions about his care needs which in itself assumes he has capacity, but on the other they want the family to have a Health and Welfare POA before they are willing to involve or consult us when such a POA should technically only be used if dad LACKS capacity. As I said, Catch 22.
So: establish whether he has capacity, I hear you say. If only it were so easy. On at least three occasions over the past two years I have asked the mental health team or social services to arrange a Mental Capacity Assessment in relation to dad understanding his care needs, but they have so far been unwilling to do this. Recently dad had a hospital assessment prior to discharge and the health professional who completed it said she was recommending that social services undertake a Mental Capacity Assessment, but still they did not act.
We may yet be able to set up a Health and Welfare POA if dad agrees and his GP acts as a ‘certificate provider’ confirming that this is appropriate and that he has an understanding of what this means. With dad’s diagnosis of Alzheimers this could go either way – but mental capacity decisions are specific to the time and task in hand, so the fact that dad lacks the capacity to manage his finances for instance, does not mean he lacks capacity in other areas.
In a way I applaud the services’ tenacity in querying our family’s requests on dad’s behalf. They are taking my father as their key priority and not falling into the trap of talking to other people over his head. Sadly, though, they do not take into account fully my father’s memory problems and that he immediately forgets information they have given him and cannot remember the many times he has failed to deal with things and got into a pickle. My father is happy for the services to speak with and be guided by his daughters, and will happily say so if asked. This is brilliant until something goes wrong and we have to deal with the services from a distance. You cannot put dad onto the telephone to tell them he is happy for help to be provided if he is sitting 200 miles away, and if they ring him separately he cannot understand what they are talking about and will tell them that he is managing fine when he isn’t.
The supposedly simple task of putting a handrail by the front door is a case in point. Dad comes out of hospital and is assessed at home by an Occupational Therapist (OT). The OT recommends a hand-rail is fitted by the front door and dad agrees to this. They send round a worker to fit the rail but he cannot decide from the assessment report what is needed. The fitter telephones me to tell me dad ‘did not understand what he needed’ so he did not fit the rail. I ring the OT to request that they clarify what they want the fitter to do and arrange a new visit for the rail to be fitted. They say that the fitter told them dad ‘refused’ to have the rail at all and that they won’t rearrange fitting at my request because I don’t hold Health and Welfare POA. Phew!
I have several other examples but my blood-pressure is rising just writing this. I think a meditation session might be in order.
And the moral of the story? Get those Powers of Attorney sorted out early on, while your relative or friend is still capable of making one and before the need for services makes things more complicated. Good luck, and may you have a fair wind behind your sails!
We’re just getting going on a project about hearing loss, dementia and care homes. As research projects do, it has a short title, ORCHARD, which is a contraction of Optimising Hearing Related Communication for Residents with Dementia. Both hearing loss and dementia are very common among people who live in care homes, so many people have both conditions, and this can lead to some major problems. For example, difficulty in being understood, becoming more confused, or losing hearing aids when these are supplied. Note that the smaller the hearing aid, the more expensive it is, but also easier to lose.
It isn’t clear at this stage what kind of intervention would make a difference to this challenging situation. Certainly it isn’t just a matter of giving everyone a hearing aid and hoping for the best. Also not many high quality research studies have been done in this area either. Paradoxically, though, there must be a lot of day-to-day experience among care home staff about how to support residents who have dementia and hearing loss. So, our research approach is what is known as a realist synthesis. We look for any published papers that may be relevant but we also talk to people whose job it is (whom we refer to by the grand title of ‘context experts’) and learn from their experience. We then combine what we learn from the literature with the hands-on experience and try to work out what’s going on.
We’re in the first couple of rounds of this work but already we have learned some interesting things. For example, people (with or without dementia) use hearing aids in selective ways. Not necessarily all the time but sometimes to target the times of day where they would otherwise struggle, e.g. watching television. There is an interesting concept of hearing aid efficiency, which refers to how the individuals use hearing aids in response to the situation in which they are listening as well as the characteristics of the hearing aid itself. Having a hearing aid can bring benefits (able to hear better and the social consequences of that) but also can have costs (e.g. fiddly, unsightly, batteries, excessive amplification) and so how someone uses it will reflect the balance of benefits and costs. There is something to be considered about hearing technology. How hearing aids look and what they signify in terms of the aging process matters just as much among care home residents as it does in our wider culture. So we shouldn’t rule out aesthetics and meaning as an impulse for some residents not wear them. But when considering the benefits and costs, if hearing aid use can be associated with positive listening and interaction, their utility might win over appearance.
In the care home setting, an important aspect is what we might call context facilitated hearing which is ensuring that the resident is able to hear at times when this is important (e.g. when making a choice about food, joining activities) but also recognising that there are times when the individual makes a positive choice to withdraw from surrounding noise, for example if there is a lot of noise from other residents. For those individuals who have dementia and hearing loss, care home staff are best placed to assist residents with choices about active listening and hearing aid use. Staff talk about judging the situation as to when residents might benefit from using their hearing aid. This, they said, comes as part of a combination of knowing residents’ preferences (e.g. for TV or chat), and reflecting on what would ‘matter to me’ in the situation.
Thinking about this, we realise that we have our own sound cycle over the course of the day. There are many different phases, each of which has its own characteristic sound environment. This may include playing the radio during the drive to work but perhaps preferring silence when profound concentration is required. And there are different sound contexts for our social interactions, for example in sharing a quiet coffee compared to a night out in the pub. And if these levels are disturbed, it can be irritating or even distressing, for example hearing unwanted music or merrymaking from the room next door when we are trying to sleep in a hotel. And our hearing operates at different levels of alertness and concentration – sometimes the sound is merely background and at others it is what we are most interested in. These nuances are perhaps unsurprising but they must also occur if you live in a care home, and any adverse effects will be magnified by the fact that it’s harder to escape them. With this in mind individuals living in care homes might benefit from oases of quiet where they can retreat to. We expect that we’ll be thinking a lot more about contexts and sound environments during ORCHARD, and maybe not quite as much about hearings aids as we first expected.
This blog summarises independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0815-20013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Tom Dening & Brian Crosbie
