In 2022, thanks to a small grant, we were looking at ways to reach people who hadn’t heard of us before.
Having worked in various suburbs in Nottingham we were aware that there are people across the city who need support, so we decided to try hosting a drop-in morning in Nottingham city centre.
Following the success of the first session held in November 2022 when ten people came, the drop-in is now running once a month.
Location, location, location
Nottingham has a great public transport system, with reliable buses and trams that connect in the city centre. But where could we host a drop-in, that would offer a safe, accessible space, drinks and cake with an element of privacy, all at a price we could afford?
I knew of a community enterprise in the city centre so I approached them to see what space they could offer. Tiger Community Hub has a café space, a shop selling upcycled products alongside practical homemade items and runs a variety of craft and self-help sessions.
Tiger is well placed for public transport links and a nearby street offers Blue Badge parking. Their activity space has a kitchen table style layout that was exactly what I was looking for. Toni, the brains behind Tiger, offered us a great deal and I booked in to host the first drop-in there in November 2022.
Spreading the word
With the venue and date set, the next challenge was to spread the word. Previous experience of promoting dementia related activities has proven that it’s necessary to do a little bit of everything so that’s what I did.
Traditional posters and fliers delivered to community venues including leisure centres, GPs, libraries and places of worship, both in the city centre and in various suburbs, worked alongside social media posts on Facebook and Twitter.
I’ve been on local radio and even had a stall at a dementia-friendly panto performance at Nottingham Playhouse. Oh yes, I have!
Tiger have been great at spreading the word too. They promote all their events on Facebook and Twitter and have added ours to their calendars. They also have a poster in their window. But most helpfully, they talk to people who come into the hub and, where appropriate, encourage them to come to the drop-in.
Whilst the need for promotion has slowed now the drop-in is established, I still look for opportunities that will help me to reach new audiences. This has included connecting with GP alliances and social prescribing networks on Twitter and presenting to the Health and Wellbeing Hub team who run information and advice stalls in community settings across Nottinghamshire.
The work pays off
From the first drop-in in November 2022 to the most recent one in March 2023, I’ve been heartened by the response I’ve had. 15 people attended the most recent drop-in. Although different people come each month, a core group seems to be emerging. It’s encouraging that people come back month after month as they must be finding the sessions enjoyable and helpful.
We have a mix of people coming including people living with dementia, sometimes with their partners, as well as family members and friends. Sometimes people we’ve known for some time and who’ve engaged with other activities we’ve run come, but mostly the drop-in is attracting people who’ve never heard of Trent Dementia before.
With no set activities, the drop-in provides a space for people to chat over drinks and food. I greet people, find out a little about their circumstances and encourage them to leave contact details if they’d like to. I also link people up to talk about similar experiences such as taking on the household finances once a partner becomes unable to manage them anymore and offer information on other groups and services in the area.
Trent Dementia’s approach is to respond to the needs expressed by people affected by dementia. To do this, we must listen to their experiences. What the drop-in has proved (as we already knew from other services we offer) is that space to meet with other people and talk is the most valuable thing we can offer. People express feelings of isolation, loneliness and the challenge of adjusting to how life looks now. They appreciate the sense of community that attending groups like the drop-in gives.
“Coming here today and talking with other people has made me realise that my partner’s condition is quite progressed and being in the care home is the right thing for them” Partner of a person living with dementia who has recently moved into a care home.
“I’m still trying to work out what my life looks like now” Partner of a person who was living with dementia who died a few years ago.
It’s fair to say that the food – soup, bread and cake – is well received too.
The benefits of working with Tiger
Working with Tiger has been great for the drop-in, for several reasons:
- Promoting the drop-in – Tiger promote the drop-ins, in person to customers and on social media. One person has come after seeing the poster in the window and another comes following chatting with Toni in the café,
- Offering a warm (literally and figuratively) and friendly welcome – the Tiger team are the first point of contact as people arrive, signposting people to the activity space,
- Providing two to three extra pairs of hands – as the only paid person at the drop-in, things can get hectic for me, so having the Tiger team on hand to deliver drinks and food really helps,
- Food and drinks all sorted – it’s great that we can offer a free meal to people at the drop-in and Tiger provide excellent, great value food,
- Space to overflow – given the numbers attending, the drop-in can get quite noisy so it’s great that there’s the café space to overflow into which can provide a quieter place to chat in smaller groups,
- Opportunities to collaborate – in January drop-in attendees decorated glass jars to be part of Tiger’s Light Night installation and I’ve joined in networking events held in the venue.
Summary
From the number of people attending the drop-in and the number returning each month, several things are clear.
One, meeting in a city centre venue works. People are happy and able to travel into a central location thanks to the good transport links Nottingham has.
Two, there’s a need for people affected by dementia to meet, to share experiences and concerns and to be heard by others.
Three, sessions like the drop-in give organisations like Trent Dementia the opportunity to gather shared experiences of the everyday impact of living with a dementia diagnosis. These can be used to inform and educate interested audiences such as those newly diagnosed, healthcare professionals and service providers.
Four, working with a local community hub has huge benefits outside of hiring the space.
Like all aspiring medical students, before coming to university I undertook a range of work experience and volunteering roles. These experiences give a taste of the career we are entering, provide evidence of our interest and commitment to said career and, of course, give us something to reflect on in interviews and personal statements. When I moved to Nottingham at the start of my first year, I was keen not to leave volunteering in the past. I therefore started to explore possible roles I could fit in around my studies. The university Students’ Union were helpful in showing me a range of volunteering opportunities and after short consideration, I decided to apply for the role of a ‘Side by Side’ volunteer with the Alzheimer’s Society. In truth, I had very little idea of what this would involve, however the opportunity to befriend and hopefully have a positive impact on someone living with dementia appealed to me. Up until this point, I’d had very little interaction with anyone living with the condition, so it was a big step into the dark and I was unsure what to expect.
After some standard introductory training for the role, I was taken to meet the individual I had been paired with. Mr J lives with his wife and received his diagnosis a fair few years before I met him. I was greeted with warmth and affability from the two of them on that first day. Two and a half years later, and with about 6 decades between our ages, I am good friends with Mr and Mrs J.
The side by side role is designed to be flexible around our availability and the service user’s preferences. In the early days of the role, we agreed I would see Mr and Mrs J weekly. Admittedly, at first the whole thing seemed a little stilted and I felt very much like a volunteer. His dementia already at an advanced stage, and having had limited exposure to dementia before, it took some months before I became accustomed to Mr J’s mannerisms and behaviours. I found it quite challenging finding things to talk about in those early days. We soon fell into a pleasant weekly routine though, usually involving a walk, a chat and a cup of tea at a café. As time went on, I found myself looking forward more and more to seeing Mr and Mrs J for the hour or two we’d spend together.
The role isn’t necessarily straightforward. I tend to find each week seeing Mr J almost like a reset. We find ourselves making similar conversation and I often hear similar anecdotes over again, yet we enjoy ourselves. I can tell he appreciates the company and does have some recognition of who I am each week. I also enjoy his company and being able to chat and have a break from studying. One of the more challenging aspects of the role I do find is on occasions where I need to take charge. This could be when we go the wrong way on walks or trying to order and pay for a coffee when there is a queue behind us. It took a while for me to get used to having to really guide and instruct Mr J in these situations.
The nature of the disease is progressive, and Mr J has obviously changed in the time I’ve known him. However, whilst the conversation may get more repetitive and we now find it not possible to go on walks, the friendship we have built remains and I hope it will continue into the future.
The work of the Alzheimer’s society is invaluable to those living with dementia and their families. If you want to opportunity to get involved with the society in any way, please visit their website: https://www.alzheimers.org.uk
I have just started my second year of the PhD in dementia care, and as attendee of the Public and Patient Involvement (PPI) meetings at the IMH, I have frequently met with people with dementia and their family carers and talked with them about their caring experience. Although different for everyone, the experience of dementia seems, to some extent, to be similarly shared by the agents in care, especially in regard to the challenges that the condition poses to their relationship within the family. I talked to a family carer whose story was so emotionally charged that it inspired the poem below. I would like to take this opportunity to thank all the carers and people with dementia who are involved in the PPI group at the IMH, and whose personal accounts constantly enrich our understanding of dementia care.
The following poem was inspired by the narratives of a spouse of a person with dementia.
Being one self, being yourself, being me!
A difficult time is when your image in the mirror is to be matched with your real self. Is this you at the mirror? Is it your imaginative self? A matter of image that I expect you to own? Or maybe it is just you looking the way you would like me to see you?
A difficult time is when all these questions have no meaning, when the image in the mirror is a person you do not know.
A difficult time for me is when you look in the mirror and you see a stranger, a person you blush for, to whom you feel attracted to. You begin to ask me when you can meet this person again, you are falling in love and you share this feeling with me.
A difficult time is when I see you are happily in love with someone else, an image in the mirror perhaps, yet you do not feel the same for me anymore.
A beautiful time is when you still share your emotions with me, no matter towards whom. We are still together.
A difficult time is yet to come.
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!
Social support at home is key to enabling people with dementia to continue to live independently and in deferring or avoiding their transition to long term care. Since the launch of the NHS and Community Care Act in 1990, and its promotion of care in the community, home care provision for people with dementia has become an increasingly important source of support. These developments have been coupled with the emergence of a system of welfare pluralism and a purchaser-provider split with the stated aim of promoting service innovation and customer choice. In addition, there have been ongoing demands for improvements in the delivery of these services. Thus, recent policy initiatives suggest that such services should be person centred and personalised. In view of the service fragmentation arising from welfare pluralism, greater integration of these services is also called for, including collaborative working and coordination between different welfare sectors thus promoting continuity and responsiveness in the care they provide. In spite of these developments, there are still huge variations in the quality of home care provision and little is known about the effective ingredients of this support for people with dementia. With the aim of answering these questions, research has taken place at the University of Nottingham investigating what these effective ingredients might be and reviewing existing literature on these ingredients. This research has found that integrated services, continuity of care and care workers who are able to make autonomous decisions and can carry out regular reassessment of their client’s needs are all important components of effective home care provision. While these components may lead to increased direct costs in the short term, this could be offset by reduced hospital admissions and by delayed transitions to more costly forms of institutional care. Follow these links to find out more:
http://www.emeraldinsight.com/doi/full/10.1108/JICA-09-2016-0032
http://www.sscr.nihr.ac.uk/PDF/Findings/RF7.pdf
In addition to the above findings, my experience as a social worker within a care management team suggests that attention should also be given to the means of gaining access to this support. For while the rhetoric behind the pluralist system of welfare that characterises the current context of welfare was to reframe service users as active consumers rather than as passive welfare recipients, I have found that many older people are unable or unwilling to engage in this process. This may be due to a lack of knowledge on what is available and how to access it or due to a preference for the universalistic rather than pluralistic welfare services that tended to characterise their formative years. Further barriers to access can arise from an innate stoicism and attitudes of ‘coping’ which research has found to be held by many older people. Thus, to access such services may be perceived by them as an admission of defeat and the start of an unwanted process of decline and dependency. In order to overcome this resistance, an effective strategy is the adoption by practitioners of a proactive and persuasive approach towards their older clients in the initial introduction of ‘low level’ services such as home care. If these strategies are adopted, then positive benefits can accrue to the client and the future need for crisis intervention may be avoided.
The poor quality of home care services is never far from the headlines these days. Recent documentaries – such as the Channel 4 Dispatches ‘Britain’s Pensioner Care Scandal’ – have highlighted the industry-wide problems of visits being cut short, unfair terms and conditions for staff, and variable quality and regulation of services. It all makes for a worrying picture.
But when we started working as home care workers for a research project at the University of Nottingham, this negative portrayal didn’t resonate with the standard of care we saw provided. Yes, we saw some of the same problems, like the effect of zero hour contracts and lack of payment for travel time, but we also found positive and encouraging examples of care.
The research project was about understanding what ‘good’ home care looks like. It involved working for 11 months with a reputable home care provider, where we completed the usual training. Some of the visits we undertook were to help clients get up and ready for the day, others were for companionship and involved chatting or taking clients out to local cafes and shops. We got to know our clients and their relatives and enjoyed spending time with them.
In the social care sector, it’s common for home care visits to last as little as 15 minutes. The organisation we worked for offered a minimum of one hour, but we still frequently found it very difficult to leave on time and would often spend extra time with our clients when we felt it was unsafe or unkind to leave them at the end of the hour. We wanted to make sure clients were safely washed and dressed before we left them, but they weren’t always ready to do this and perhaps wanted to enjoy their breakfast and a chat first (who can blame them).
Because we were working with people with dementia, it was also often impossible to explain in any meaningful way why leaving on time was an issue, and so it felt unkind to try to do this.
Other care workers at the provider said they regularly spent unpaid time with clients and were not paid for the time travelling between visits. The number of hours they received each week was also unpredictable and understandably this caused some to worry about their finances. We were thankfully paid by the university so this didn’t affect us, but the long hours were a challenge and meant we often skipped meals and missed out on time with family and friends.
Despite these issues, we still saw staff going ‘above and beyond’ the call of duty. We witnessed care workers bringing dolls and pets to visits for clients to interact with. Others used their own money to purchase treats for clients (such as scones and strawberries), and referred to clients as a member of the family. Most care workers also demonstrated a high level of skill and sensitivity in communicating with clients, especially those with dementia. Some also told us how they take their work home with them – as clients occupy their worries and thoughts outside of ‘usual working hours’. Of course, this may be a reflection of the recruitment and training standards in the company we worked for, we know it’s not the case everywhere.
One key thing we found, and other care workers told us, was that care visits are particularly rewarding when there are signs of a reciprocal relationship between care worker and client. For example, when clients show their appreciation and signs of their personalities, which may otherwise be concealed by their symptoms of dementia. Some of the most enjoyable visits were those where clients remembered things about us, like where we’d been on holiday, and shared stories of their own experiences, as this enabled a more reciprocal conversation.
We are now interested in finding out more about how care workers may find value or reward in care visits when the client is uncommunicative, or cannot articulate their thanks. Our time with the company taught us that care work is a very diverse and highly-skilled job, and it deserves both better recognition and higher pay.
Samantha Wilkinson and Lucy Perry-Young
A version of this article first appeared in Community Care: http://www.communitycare.co.uk/2017/05/11/saw-care-workers-going-beyond-call-duty/
Health care assistants and social care support workers play a central role in front line care provision. For not only are they are usually the first point of contact for those in receipt of care, they also deliver around twice as much of this care as registered nurses, including many of the complex roles formerly undertaken by these nurses. They are also growing in number with over 300,000 new carers commencing work in health and social care organisations each year. Due to demographic trends towards an ageing population, these numbers are likely to progressively increase, particularly in the specialisms of older age and dementia. Policy makers have responded to these challenges with national strategies such as the National Dementia Strategy, aiming to improve the delivery of front line care. In spite of this, front line practice is still often characterised by inconsistency and the common adoption of depersonalised and task centred approaches. These inadequacies have been exacerbated by assumptions that nothing can be done to improve the wellbeing of people with dementia or that being a good carer is all about innate characteristics and common sense rather than something that can be acquired through training. In addition, in spite of the widespread advocacy of key concepts such as person centred dementia care, there has been a lack of clarity on how it should be implemented in practice and on what resources are required in order for this implementation to be achieved.
In recognition of these issues, increased attention has recently been given to the training needs of the front-line care workforce by policy makers culminating in the Cavendish Review in 2013. The review called for the introduction of a Certificate of Fundamental Care – now called the ‘Care Certificate’ and recommended that all new front line care workers should achieve this before working unsupervised. The Care Certificate, sets out 15 standards that are required to provide safe, effective and compassionate care. As such, it aims to promote a consistent approach to staff training and induction and encourage improvements in career development pathways and the safety and quality of care provided by care organisations. Although not mandatory, as from April, 2015, it is now expected to form part of training for new recruits to care organisations in England with the Prime Minister’s Challenge on Dementia suggesting, in 2015, that all newly appointed care staff should undertake this training. In order to optimise its impact, the implementation of the Care Certificate is now being evaluated in an 18-month study funded by the Department of Health Policy Research Programme. It broadly aims to assess how successfully the Care Certificate meets its stated objectives and to explore areas for improvement. Follow this link to find out more:
Over the past twenty years, more and more research had been produced in partnership with patients and carers. People who know about illness and disability through living with it day-to-day are teaming up with academic researchers and working on a research project together. When this is done well, the result is better because it blends the academic skills of experts by training with the gritty reality that is brought by experts by experience. It delivers a more accurate account of real life and more really useful recommendations for change. The people who fund health research call it ‘patient and public involvement’ and insist on it.
Doing patient and public involvement properly means that patients and carers get involved with every stage of the research, from choosing what to study, to bidding for funds, doing the project and getting the findings into practice. Some bits are easier than others.
One bit is collecting research data by conducting interviews. In the past, academic researchers decided on the questions, checked with the Ethics Committee, found some people willing to be interviewed and got started.
Over the past 20 years, pioneers have started to do their interviews differently. Sometimes they team up with a volunteer patient or carer and carry out the interview together, perhaps asking alternate questions. This volunteer patient or carer is a ‘peer interviewer’ as they share some life experience with the person that they are interviewing. Other pioneers have invited the peer interviewer to work alone and ask all the questions themselves. People sometimes open up and give much more honest answers to someone who really knows ‘what they are on about’.
In recent weeks, I have come across several research teams that want to work in this way, but have been prevented from doing so. What is going wrong? I’d love to know what you think the problem is, and what can be done to fix it. In the meantime, here’s a few questions.
- What level of ability and skill is required to become a peer interviewer? People with learning disabilities have become peer interviewers, so could people with dementia do the same?
- The research world shuts people out until they are properly trained and qualified to do the job properly. For example, researchers are expected to attend a course called ‘Good Clinical Practice’. Are these gates keeping experts by experience out? How much training should peer interviewers have?
- Hospitals won’t allow anyone near their patients unless they are a relative or friend, staff member or authorised volunteer, or researcher with a ‘hospital passport’ that shows their project has been approved. Do these mechanisms that are designed to keep patients safe shut out peer interviewers?
There are lots of others issues too, like how people are recruited, supported and supervised, whether they should be paid and how confidentiality can be maintained. Can we pool our experience and find or write a guide to make it easier for others to move ahead on this?
Crisis can occur in a person with dementia for many reasons that may be related to the person’s physical health, risks and hazards at home, social changes, behavioural changes, or problems that a family carer is facing. Resolution may require a variety of different tactics such as home adaptations, involving neighbours or friends, accessing specialist homecare services or professional healthcare support, and educating carers and family members.
In many areas across the UK there are teams that can help manage crisis in people with dementia through providing support, advice, and education to both people with dementia and their family and friends. However, this type of care is not standardised across the UK, and the teams differ in respect to the services they provide, the professional backgrounds of the staff, and even what the team itself is called. Some teams will conduct assessments and design a plan to support the person with dementia and the carer at home, whereas other teams may input less directly by conducting a review of medication, arranging social care packages and liaising with the person with dementia’s GP. Most teams will include community psychiatric nurses, but other professions such as occupational therapists and psychiatry vary and there are no set criteria for the types of roles that must be present in a team.
The effectiveness of teams that manage crisis in people with dementia has not been established because there has not been enough research conducted with them. Additionally, teams do not exist in every area, as some patients are instead looked after by their local community mental health teams (CMHTs). We don’t know if patients under the care of CMHTs are disadvantaged by being unable to access specific teams who manage crisis in people with dementia.
Our programme of research is called Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT) and our first step is to find out about current practice across several teams in different areas of England. We are going to interview members of staff from teams that manage crisis in people with dementia, people with dementia who have recently made use of these teams, and carers of people with dementia who have made use of these teams. We want to find out what current practice looks like, and what people’s experience of giving and receiving care are. We will also be asking about things that help teams provide the very best care, and things that get in the way of providing the very best care.
In addition to our interviews, we will be holding focus groups with staff members, people with dementia who have used the services of the teams, carers, and other stakeholders such as managers. We will be asking people with dementia and carers of people with dementia to not only take part in the focus groups, but to help us run them, ask the questions and guide the discussions. This is important to add an extra dynamic to the groups, and will allow our enquiry to reach our participants on more sensitive and empathic level.
When we have collected all the information from the interviews and focus groups we will begin to build a toolkit of resources that can help teams who manage crisis in people with dementia to be more effective. We will be developing a measure alongside the toolkit that will show us how well teams currently care for people with dementia, and the toolkit will assist them in improving what they do so that all teams can provide the very best practice. This process will take approximately one year, and after that we will begin a trial to find out if the toolkit that we have produced is effective in assisting teams to help people with dementia who experience a crisis stay at home instead of being admitted to hospital.
This is a very exciting programme of research that will improve the quality of life and the healthcare experience of both people with dementia who experience a crisis and their families. We’ll be blogging throughout the programme to let everyone know our progress and findings and we welcome your comments o
I feel very honoured to have been awarded an Alzheimer’s Society knowledge exchange fellowship. With this funding I will be working with colleagues in Netherlands to share expertise about dementia care in the community. Just as importantly, I will be working with stakeholder in East Midlands and across UK to listen to their views and experiences and sharing our ‘academic’ knowledge in ways that can bring benefits to people with dementia and carers.
This project is a collaboration with Dr Marjolein van der Marck, Radboud university medical center at Nijmegen, and funding is from Alzheimer Nederland as well as Alzheimer’s Society in UK. We are pleased to have the support of our supervisors; Prof John Gladman and Prof Tom Dening at University of Nottingham, and Prof Marcel Olde-Rikkert, Dr René Melis and Dr Jenneken Naaldenberg at Radboud umc. We are also working with academic colleagues such as Dr Maud Graff and Dr Fiona Marshall.
Within the project we will share expertise between the two academic centres. Our work has been about understanding needs of individuals and coordinating local community based services to meet these needs. We know this does happen sometimes, and at later stages of dementia, but at earlier stages, we are hearing it can be sporadic and often disjointed. We are also interested in Dementia Friendly Communities and we will investigate whether these initiatives may improve access to support.
We will consult with many stakeholders in community services in both East Midlands, UK and Gelderland, Netherlands. We will also interview people with dementia and their carers. We would love to hear your views or comments on this project. We will also be holding seminars and web-based seminars to share our findings. Please email me [email protected] or share your views on twitter @nchadborn
