This post is written by Alice Burnand (Research Assistant, Department of Clinical and Movement Neurosciences)

Self-management approaches have been developed and tested to give insight into their effectiveness and which population group may benefit. So far, research has received mixed results on the impact that self-management can have on complex health conditions outcome measures, such as wellbeing, function, quality of life, and caregiver wellbeing. Further high-quality research needs to be conducted. The PD-Care randomised control trial (RCT) is currently testing a self-management toolkit which aims to improve the care of people with Parkinson’s Disease (PD), who are living at home.  Here, I will discuss the use of digital technologies and self-management tools and how they support individuals with complex health conditions, detailing PD-Care as an example.

Rise in use of digital technology after the COVID-19 pandemic

Services, relationships and healthcare all depended on online communication to work through the COVID-19 pandemic. This resulted in a vast acceleration in the use of digital technologies, such as social media and telemedicine, to abide by social distance regulations whilst maintaining communication across the world.

COVID-19 also resulted in considerable strain on service delivery across the NHS in the UK, causing a significant backlog in elective care.  Six million people are now on the waiting list to be seen, up from 4.4 million pre-pandemic. Unfortunately, the impact of waiting longer for treatment and medical advice is wide ranging, from worsening outcomes for patients, to increasing pressure and strain on NHS staff, evidenced by the latest nursing strikes. This burden is exacerbated by the rise in the ageing population and increased life expectancy. Although we are living longer, we are not necessarily living healthier, as the emphasis has changed from managing infectious diseases to supporting complex health conditions, with over 50% of clinical appointments and 70% of hospital bed resources currently used due to complex care needs.

How do we support people with complex health conditions?

Clinician appointments for complex health needs are important for supporting with debilitating symptoms. They offer person-centred medical advice and treatments for the specificities complex conditions bring. Due to rising demand, lack of resources, and backlog from the COVID-19 pandemic, reviews with specialists tend to be infrequent. Patients are often left feeling isolated and alone, particularly in the months following a new diagnosis.

Self-management approaches offer a solution and toolkits such as the one used in the PD-Care study, emphasise the central role that individuals have in managing their health. Example approaches include learning new skills, patient education, and monitoring symptoms. Self-management tools increase autonomy and independence in managing patients’ complex conditions, guided by the latest research. In recent years, there has been increasing interest in these approaches for complex conditions. Evidence shows that self-management can improve functional outcomes and wellbeing, as well as decrease health care utilisation (see Panagioti et al, 2014).

The rise in use of digital technologies go hand-in-hand with the increase in use of self-management tools. The government is investing over £300 million in creating new online services and technologies to meet the needs of our ageing society and those with complex conditions, making healthcare support more readily accessible for those who need it. Self-management tools enable individuals to learn about their condition, understand treatments, and track symptoms which they can further discuss with their healthcare professional. It enables the individual to be more prepared for clinical reviews, for them to run more efficiently, and to have more control over their healthcare and treatment. Self-management also facilitate individuals to reach their own health-related goals that contribute to wellbeing and enhanced quality of life. Autonomy and independence are considered an integral component of wellbeing (Yu et al, 2018), and self-management approaches centralise this.

Autonomy in deciding what is most important to an individual when managing their complex health condition is crucial. The proliferation of treatment options for complex conditions can add demands and burden to the patient, and the treatment guidelines focus only on clinical outcomes, often ignoring patient capacity and motivation.  When there is an imbalance between patient capacity and treatment workload, patients are less likely to engage with healthcare professionals, or may ignore other important aspects of their lives. The term ‘minimally disruptive medicine’ (Abu Dabrh et al, 2015) refers to evidence-based, supportive care that fits into the patient’s capacity, prioritising goals that are important to the individual and focus on improving wellbeing.

Insights from the PD-Care Study

The RCT that the PD-Care team are conducting evaluates a self-management tool (digital and paper format) for individuals with Parkinson’s disease. The tool, titled ‘Live Well with Parkinson’s’, aims to increase independence, confidence, and well-being in those with a diagnosis, as well as their caregivers. The team have two ‘Living Well Facilitators’ who complete up to six sessions over six months via Zoom or telephone, to help participants understand and use the toolkit appropriately, with sections that enable them to educate themselves, track symptoms, medications, and activities, monitor progression, and work towards ‘wellbeing priorities’ that are specific and important to each individual. They can also share their toolkit with health care professionals, to improve communication and clarity when it comes to their clinical appointments. This follows guidance of minimally disruptive medicine and aims to improve autonomy and confidence in those with complex health conditions.

We are currently recruiting from both primary and secondary sites and are delivering the intervention to participants. If you would like to read more about the work we have done so far on the PD-Care study, please click here or contact Alice Burnand: a.burnand@ucl.ac.uk.

 

 

 

 

 

 

 

Written by Abi Woodward (Research Fellow), Megan Armstrong (Senior Research Fellow) and Rasha Meah (Student Researcher, In2Research Programme).

Despite having worse health outcomes, individuals experiencing socioeconomic deprivation are less frequently included in research. Through a Beacon Bursary funded project, we explored the barriers to research participation among underserved groups. This project is linked to a larger study exploring the self-management of multiple long-term conditions in people experiencing socioeconomic deprivation. We held two public engagement workshops (online and face-to-face) in June 2022 with a total of 11 London-based participants that had at least one long-term health condition and were struggling financially. Two Patient and Public Involvement (PPI) members also attended to share their perspective on taking part in research studies.

What happened at the workshops?
Through a combination of group discussions and interactive exercises, we asked participants to tell us about their experiences (if any) of being involved in research, their reasons for taking part or not, any negatives associated with taking part and how they find out about research opportunities.

We began the workshop by seeking to understand participants’ perceptions of research. For the online session, this was achieved through a myth busting exercise. During the face-to-face session, we did a postcard exercise to visually explore participants’ understanding of research. Postcard exercises are designed to help people relay their feelings through pictures or photographs. We scattered lots of postcards on a table top and asked participants to choose the picture that most related to what they were being asked and they added notes afterwards:

What did participants tell us?
Some of the main themes that emerged were around accessibility of research opportunities, the importance of feeling valued and financial payments/reimbursements.

Access to research opportunities
Most of the participants had some previous experience of research (i.e., interviews, clinical trials) but they had general difficulties finding research opportunities. Participants made suggestions about how to raise awareness of opportunities such as distributing leaflets in community provision including GP surgeries, advertising in newsletters, social media and free newspapers, and word-of-mouth. The issue therefore was not a lack of research but a lack of awareness of opportunities:

“There’s very little information out there. You have to actively search it out to get involved.” (Face-to-face participant)

Participants spoke about flexible data collection methods such as offering options for interviews to accommodate needs i.e., physical/mental health, mobility and disabilities. A shift towards remote research since the Covid-19 pandemic has created more accessible options for some people who work or have childcare responsibilities, but the issue was also raised that researchers need to be mindful of digital exclusion among underserved groups.

Feeling valued
Overall, participants wanted to feel valued when taking part in research; something that was considered essential for repeat engagement. Unfortunately, some had encountered bad experiences in the past:

“I got the impression that researchers do not really appear genuinely interested in the input of the public…it seems they’re just meeting the criteria and ticking boxes.” (Face-to-face participant)

Issues around trust, respect, compassion, and cultural competency were also raised. One participant spoke at length about this:

“I’ve come here to add my lived experience…not…to be told that my experience isn’t good enough…or it isn’t what the researchers actually want…there’s a reason why I’ve made it to this [session] today…There were things done for [the researcher] to understand my position and background and because of that, I’m here.” (Online participant)

A positive experience could therefore give people a sense of empowerment:

“Being an expert by experience and sharing what I’ve been through in order to help others is my way of making lemon cake out of lemons…PPI is my way of giving back a little but being part of something great.” (PPI representative, online workshop)

Participant payments
For those on a low-income, the financial implications of taking part in research was raised at both sessions. Appropriate payments/reimbursements were considered essential since many were unable to undertake paid employment due to health conditions.  Participants expressed the need for researchers to pay participants in a timely manner and to provide several options for payment because of the implications upon benefit claims/entitlement. Travel expenses were also a source of concern. To increase the accessibility of research opportunities, it was suggested that advance payments for travel costs could help.

One participant who did not have access to Wi-Fi spoke about the cost implications of doing online research using mobile data:

“If I’m using my last five or 10 pounds to actually access [remote research]…if I’m getting the money from them in four to six weeks’ time what do I live on, what do I eat…The monetary aspect is a massive barrier in itself.” (Online participant)

With these comments in mind, research departments may wish to consider whether participants should be routinely reimbursed for online research costs (see useful resource on payment guidance for researchers).

Next steps
The project has produced a short film which features workshop participants and a PPI representative. The purpose of the film is to raise awareness of the barriers to participation in research with underserved groups.

We have asked participants for their ideas on how to share the project outputs across local communities/networks, to encourage engagement in research. We plan to feed these ideas into our dissemination strategy.

The project team would like to thank everyone who participated in this project for their valuable insights and contribution.

This post is written by Greta Rait (Clinical Professor of Primary Care and Health Services Research) and Jane Wilcock (Senior Research Fellow) who have played a lead role in an international collaboration aimed at supporting people after a diagnosis of dementia.

By 2050, the World Health Organisation has estimated that 139 million people world-wide will have dementia. There is currently no treatment for the disease and no cure. We know that people living with dementia and those who care for them often have negative experiences of the dementia diagnostic process.

People tell us that they receive insufficient information after a dementia diagnosis, there is a pervasive view that little can be done and that you are given are a diagnosis and told to go to home and get on with it. This has been exacerbated by pandemic restrictions on services and community-based supports.

Most dementia post-diagnostic support does not consider quality of life and is reactive and not proactive, it is also very patchy in terms of provision at an international and national level. Health care professionals can find communication of a dementia diagnosis difficult. They can find it tricky to get supports and care packages in place. They report variations in service availability and a lack of integration of services.

What was our approach?

We are part of an international consortium led by the University of New South Wales with colleagues in Canada, The Netherlands and Poland partnering with people living with dementia, those who care for them and healthcare professionals to improve dementia support.

The UK team (Greta Rait, Jane Wilcock at UCL and Louise Robinson and Marie Poole at Newcastle University) undertook a review and thematic analysis of global National dementia strategies and guidelines and public health campaigns.  It became clear from this review and workshop discussions with our partners that there were multiple areas requiring attention but for this ambitious study we wanted to focus on doing one thing and one thing well. From this it became clear that we would focus on the need for support during the first 12 months post diagnosis.

Our work highlighted:

• the uncertainty following a diagnosis about what the future holds and who can help
• how accessing good support at the right time is key to living positively with dementia
• concerns among healthcare professionals that they don’t always know enough about dementia, or the organisations and services that can offer practical or emotional support
• ongoing issues during the Covid-19 pandemic with finding and providing good dementia support

Through an iterative and collaborative process of co-design workshops and user testing refinement we have developed Forward with Dementia  a website and personalised toolkit to help people with dementia, their families, and professionals providing support, to access the right information and support at the right time. For free and on any device. Each partner country has translated and culturally adapted the intervention to their own regions. The site is available in Polish, Dutch and French Canadian.

How Forward with Dementia can help?

The online guide brings together practical advice, personal experiences from people with dementia and those who care for them, and topical news stories.  You can find information on key issues: Hearing (and giving) a diagnosis; Coming to terms with dementia; Managing symptoms and changes; Supporting health and wellbeing; and Making plans and decisions.  The site is designed to simplify navigation, ensure accessibility, and written in a friendly non-scientific language either for a person with dementia, family carer or healthcare professional.

A personalised toolkit lets people choose and save information that is relevant to them and create actions to take positive steps to living life with dementia,  without having to remember a password and log-in name.  The toolkit can be shared with others such as family, friends, professionals though sharing a unique URL.

Bill has been part of the UK co-design group.  He cares for his wife Jo and is a passionate advocate of improving understanding of dementia and living positively. As well as being involved in the development of the guide, Bill continues to use it for support as their circumstances change:

“My wife Jo was given her diagnosis during lockdown and I, like many others had no experience of what to do next. Who do I turn to? What help is available? Where can I find out everything I need to know? The realisation that I didn’t know what I didn’t know was overwhelming. now. If only Forward with Dementia had been around then my life would have been so much easier. As the research and website developed so, sadly, did Jo’s journey. I was able to contribute from real time life experience and also gain insights from others into both my journey and Jo’s, all at the right time for me. I have and will continue to use this resource as a valuable part of my dementia toolkit.”

 Join us to find out more

We are trying to reach out to as many people as possible who would benefit from accessing Forward with Dementia.

• You can explore the site and create a toolkit
• Share the guide with family and friends
• Consider using this with patients or clients to start difficult conversations
• Help us with our evaluation and to improve the site by completing the short website survey via the homepage or reach out and speak to us. We would love to hear your feedback.
• You can request our leaflets and posters to help raise awareness

Follow us on social media for regular updates and information about promotional events.

Facebook: @ForwardDementiaGB

Twitter: @ForwardDementia

Instagram: forwardwithdementia_gb

YouTube: Forward with dementia International

What next? We have been awarded a research grant from the NIHR Three Schools’ Dementia Research Programme to produce and deliver a tailored supportive guide to social care after a diagnosis of dementia.

Jane will lead on this research across the NIHR Schools of Primary Care, Public Health and Social Care Research partnering with colleagues at Newcastle University and King’s College NIHR Policy Research Unit in Health and Social Care Workforce.

For further information about Forward with Dementia, or to request resources such as leaflets or posters contact Jane Wilcock at j.wilcock@ucl.ac.uk

Forward with Dementia in the UK are funded by the Alzheimer’s Society.

 

To mark the National Nutrition & Hydration Week 2021, Kanthee Anantapong (Psychiatrist and UCL PhD student) will share recent work from his team, which involved people with mild dementia discussing their perceptions about eating and drinking difficulties.

At some point in dementia progression, 8 in 10 people living with dementia can experience some types of eating and drinking problems. This includes food appetite and preference changes, inability to recognise food and utensils, behavioural difficulties and disruptive eating routine, and swallowing difficulties. The difficulties usually become more severe at the later stage, and this is challenging and demanding for families and healthcare professionals to make decisions and provide support for persons with dementia [1]. Knowing what people living with dementia would want for themselves will help the families and professionals in managing the eating and drinking difficulties at the later stage.

In our recent project, we talked to people with mild dementia and asked them about their understanding and needs on eating and drinking problems resulting from dementia [2]. We found that many people with mild dementia experienced some mild changes in their appetite, food preferences and social meals. Few people had mild swallowing difficulties. Most attributed these changes to their own choices, other life circumstances such as retirement and moving house or other physical diseases such as dental problems, diabetes and Parkinson’s disease.

People with mild dementia recognised that at the later stage they would be less capable of taking care of themselves, including eating and drinking problems. They generally accepted some assistances if other people would try encouraging them to eat and drink, offering them favourite dishes and drinks, and adapting utensils and home environment. They did not want their families to sacrifice themselves too much for this because it would require lots of their effort and personal time. People with mild dementia did not like other people treating them like a child to give them food and drink, for example, coaxing or pretending the spoon is an aeroplane. The use of artificial nutrition and hydration (feeding tubes and drips) was also not their ideal choice to support eating and drinking problems, especially the feeding tubes. While intravenous drips were acceptable for treating acute illnesses, they felt tube feeding was unnatural and would not bring them pleasure of eating and drinking and quality of life. So, they preferred families and professionals to avoid using tube feeding for them.

There are growing recommendations to include people with dementia in making decisions and planning for their own care [3]. However, from our work we found that most people with mild dementia want to delay discussion about eating and drinking difficulties because they thought this might not be related to dementia, or they probably could adapt their lifestyle to prevent the progression. The fears of being burdensome and being treated like a child could also be the reasons for their wish to delay. The delayed discussion and planning can lead to the later eating and drinking difficulties being managed against the person with dementia’s preferences, dignity and autonomy, for example, the overuse of tube feeding [1]. In fact, people with mild dementia in this study strongly wanted to maintain their sense of autonomy and have a good quality of life throughout their dementia progression, especially at the end of life.

To ensure that at the later stage the person with dementia will receive eating and drinking support aligned to their wishes, we encourage families and healthcare professionals to gradually but continuously engage the person with dementia in the discussion and bear cautions in mind about the person’s understandings and fears about eating and drinking problems and assistances. For people who have missed the chance to the discuss this, we recommend families and professionals look for and respect clues from the person with dementia when providing eating and drinking care. For example, to offer their favourite food and drink if they requested, or to stop and try later if they refused at the time. The aims of eating and drinking at this stage should be to respect their dignity and maintain wellbeing, but not to keep complete nutrition, which are in line with the voices of people with mild dementia participating in our project.

References

1. Anantapong K, Davies N, Chan J, McInnerney D, Sampson EL. Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review. BMC Geriatr. 2020;20(1):520. doi: 10.1186/s12877-020-01931-y.
2. Anantapong K, Barrado-Martín Y, Nair P, Rait G, Smith CH, Moore KJ, et al. How do people living with dementia perceive eating and drinking difficulties? A qualitative study. Age and Ageing. 2021. doi: 10.1093/ageing/afab108.
3. Alzheimer’s Society. From diagnosis to end of life: The lived experiences of dementia care and support. London: Alzheimer’s Society, 2020.

 

In this post Nathan Davies talks about some of the recent work he has led on support family carers of people living with dementia, and talks about some of the Covid-19 work which has been implemented in the NHS.

This week marks Carers Week, you may have all seen in the media the wealth of stories and people talking about the challenges that informal carers (friends or family) have experienced over this past year during the pandemic. Carers UK have reported this week that 72% of carers have not had any breaks from their caring role since the start of the pandemic (1).

We know one of the most demanding caring roles is caring for someone living with dementia, with over 750,000 carers currently in the UK. Most of my work looks at how we can support family carers, in particular in the later stages of dementia or planning for the end of life. This is a particularly difficult time for carers and one of the key challenges they face is making decisions about the individual’s care. Decisions may include moving into a care home, increasing the amount of support, managing eating and drinking difficulties, and ensuring the everyday well-being of the individual.

In a recent project we explored the decision-making process carers go through and how they make decisions(2). We developed a model of decision making which considers the context and the processes involved. Making this process and the context explicit may be helpful for carers as a guide to help their thinking when making complex decisions, but also for professionals when trying to start significant conversations.

It is important to consider the context in which decisions are being made including the individual’s personal preferences about their care, any advance care plans they have made or lasting power of attorney in place, considering if the person still has capacity and what their current health status is, and finally, thinking about what support is available from others.

As you can see in the image there were 7 stages in making a decision:

1. Identifying who is the decision maker or the team and clarifying what is their role
2. Sharing information about the decision which needs to be made, this may include what the problem is, what are your options etc
3. Clarifying what is important to those involved, considering their values and preferences, being mindful of disagreement
4. Managing and considering the emotions involved in making what can be quite significant decisions
5. Think about what is the feasibility of the options which are available – this is likely to include finances and the impact on the wider family or support network
6. Balancing what you would like to do (preferred choice) with what you can actually do
7. Make the decision and reflect on the outcome of this decision to inform further decisions or refine your decision

Now this may all seem rather theoretical, but we have already used this to create some applied resources which carers and professionals can use to help with discussions and decisions.

We have developed a decision aid to support family carers of people living with dementia who are at risk of or who have Covid-19 and are not able to make their own decisions. The decisions focus on care at home, care in the care home and care in hospital. In particular, we have included:

• How to manage care at home
• How to support your relative/friend in a care home
• What to do if they become unwell
• Should they go to hospital
• How to keep in touch if you can’t visit

We provide a variety of information including the signs and symptoms of COVID-19 which may be different for older people, and the legal aspects of making decisions. We bust some myths about what support options are available at home. We also consider the benefits and advantages of different options of care including going into hospital.

This guide has been widely shared and is freely available online. It has been implemented as part of NHS England and NHS Improvement Dementia COVID-19 Pathway.

The latest version of the decision guide is available now from: https://www.ucl.ac.uk/psychiatry/decision-guide

For our work on this we also won Alzheimer’s Society’s Dementia Hero Award for Research.

1. Carers Week 2021 report. Breaks or breakdown Carers Week 2021 report. London; 2021.
2. Davies N, De Souza T, Rait G, Meehan J, Sampson EL. Developing an applied model for making decisions towards the end of life about care for someone with dementia. PLoS ONE. 2021.

This post is a press release from Marie Curie about the latest Covid-19 work being led by Dr Nathan Davies from our Centre for Ageing Population Studies. 

Families need more help to make quick decisions about the care their dying older relatives with dementia should receive during COVID-19, say UCL researchers, with the support of Marie Curie and the Alzheimer’s Society.

Many older people with COVID-19 will have dementia which affects 22% of people aged 85 and over¹.  They may experience a sudden deterioration with rapid onset of respiratory failure.  Given the high death rates from COVID-19 in older people, even in hospitals, it is hard for people with dementia and their families to know what the best thing is to do about treatment and care options.

For those who lack the ability to make decisions for themselves, it may also mean that families have to make very quick decisions under stressful circumstances, for instance about resuscitation. They will also have to weigh up the pros and cons of either sending their elderly relatives to hospital for medical attention or receiving palliative care at home, where they may be more comfortable, and families will be able to maintain contact with them.

Having to make these difficult decisions can have a profound impact on the emotional well-being of family members, and lasting feelings of guilt and doubt if they made the right decision.

Researchers from the Marie Curie Palliative Care Research Department and Centre for Ageing Population Studies at UCL are producing an evidence-based guide, for family carers and people with dementia to use in the management of COVID-19. It is estimated that nearly half a million people with dementia in the UK live in their own homes².  Latest available data also shows that 38% of all COVID-19 deaths occur in people aged 85 and over (up to 24 April)³.

The research team hopes that the new guide will also ease the emotional burden that families can experience and help resolve any feelings of uncertainty about the decisions they have made for their loved ones.

Tracey Lancaster, whose mum is living with dementia said: “I’m dreading the call from the care home to say that mum has coronavirus. I worry about her fighting for breath and therefore we would have to decide if she goes into hospital or what care can be provided in the home. I’m not sure that I could make that decision. So, a decision guide like this one would be invaluable for me and my family.”

The rapid project, funded by an Economic and Social Research Council COVID grant and supported by end of life care charity Marie Curie and Alzheimer’s Society, will identify factors influencing place of care and death in older people as well as the key challenges and decisions which family carers of people living with dementia are facing currently in the COVID-19 pandemic.

The pandemic brings extra challenges to those who are ‘social distancing’ from their older relatives – and means that they may also need to make quick decisions over the phone with a professional they’ve never met.

Co-lead researcher Dr Nuriye Kupeli, Senior Research Fellow at Marie Curie Palliative Care Research Department, UCL Division of Psychiatry and an Alzheimer’s Society Fellow, said: “It is a difficult time for people living with dementia and their carers. Due to measures such as social distancing, self-isolation and shielding, people living with dementia and their carers may not have access to support and guidance when making difficult decisions. This work will help us to understand better how people living with dementia and their families are managing important decisions about care during COVID-19 and how best to support them.”

Co-lead researcher Dr Nathan Davies, Senior Research Fellow at Centre for Ageing Population Studies, UCL Institute Epidemiology and Health, and Alzheimer’s Society Fellow, said: “This is such an important project and follows on work we’re doing prior to COVID-19. Many families caring for someone living with dementia will be making daily decisions on behalf of their relative with dementia. But we know many will not have discussed or planned end of life care.

“The nature of COVID-19, which can worsen rapidly, means they will be forced to make quick decisions with potentially little support or information. They may be feeling overwhelmed considering what is best for their relative. The decisions they make may have a lasting impact on their grief and wellbeing: We want to try and help support carers with decisions to ease these feelings.”

The researchers say that having early and open conversations about end of life wishes with older relatives, particularly during COVID-19, could avoid potentially futile and burdensome interventions at the end of life while ensuring that loved ones get the compassionate care they need.

Marilyn Beattie, whose husband Gordon died in 2019, following a dementia diagnosis, said: “I felt like I was shooting in the dark most of the time.  I didn’t know who to turn to, or what was available. It would have changed everything if I had an aid like this – a life-changer.”

           

Matthew Reed, Chief Executive of Marie Curie said: “At Marie Curie, we understand the value of planning ahead for the death of a loved one.  However, when this isn’t possible, particularly during these uncertain times, it’s important that families living with dementia are properly supported to make difficult decisions and are not left with a legacy of grief and guilt because they’re not sure they made the right choice in a moment of crisis.”

 

Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society said:

“Alzheimer’s Society are proud to unite with Marie Curie to support this urgently needed research. Covid-19 has severely affected people with dementia and their carers, and our Dementia Connect support line has been flooded with thousands of calls for help. This new, evidence-based guide will help carers and people living with dementia feel informed and supported, practically and emotionally, when making important decisions about care during the pandemic including hospitalisation, treatment and Do Not Attempt CPR.

 

“We know that the current crisis is making choices like these even more difficult which is why it’s so important Alzheimer’s Society researchers use their expertise to support people through this.”

In this post Tra Pham discusses her recent work with colleagues from the department, Division of Psychiatry and King’s College London on new diagnoses of dementia and the differences among ethnic groups.

Around 46.8 million people worldwide have dementia; this is expected to rise to 131.5 million by 2050. Recent studies have reported stable or declining rates of new dementia cases overtime.

In 2010, members of our department (Rait et al, 2010, BMJ) conducted a primary care database study to investigate survival of people with a diagnosis of dementia, and reported a stable rate of new dementia diagnoses in UK primary care between 1990 and 2007. We know little about the differences in the likelihood of receiving a dementia diagnosis among different ethnic groups. Some evidence has indicated that people from Black and Minor Ethnic (BME) groups present at services (i.e. GP) later in their illness. Therefore, compared with the White British ethnic group, BME dementia patients may have less access to timely diagnosis. This can prevent them from benefiting from early intervention and treatment which may help slow the progression of the disease.

Our recent study reported the overall rate of new dementia diagnoses in UK primary care between 2007 and 2015. In addition, we reported, for the first time, the rate by White, Asian, and Black ethnic groups. Pulling together current best evidence of new dementia cases in the community and the 2015 UK census data, we estimated the proportion of White and Black people developing dementia who received a diagnosis in 2015. Our hypothesis was that there would be a smaller proportion of Black people with dementia who were diagnosed compared with people from the White ethnic group.

We analysed data of 2.5 million older people from The Health Improvement Network (THIN) database. 66,083 new cases of dementia were identified, which corresponded to an increased rate of new dementia diagnoses between 2007 and 2015 (Figure 1).

Compared with White women, the dementia diagnosis rate was 18% lower among Asian women and 25% higher among Black women. This rate was 28% higher among Black men and 12% lower in Asian men, relative to White men. Based on diagnosis rates in THIN data and projections of new dementia cases from community cohort studies, we estimated that 42% of Black men developing dementia in 2015 were diagnosed, compared with 53% of White men.

The results thus suggest that the rates of people receiving a diagnosis may be lower than the actual rates of developing dementia in certain groups, particularly among Black men. There are several possible explanations for this. It could indicate that Black men experience barriers to accessing health services or receiving a diagnosis. GPs may be more reluctant to diagnose dementia in BME groups especially if culturally competent tests are unavailable. GPs and families might also be reluctant to name dementia in communities where more stigma is associated with a diagnosis.

Our study emphasises the need for service improvement targeting BME groups who might be facing barriers to accessing health care services and getting a dementia diagnosis. GPs should be equipped with culturally appropriate assessment tools in order to make a timely diagnosis of dementia for BME patients.

Our findings also highlight the importance of raising awareness of the benefits of getting a timely diagnosis of dementia, particularly in people from minority ethnic groups who may be more at risk of dementia. Timely diagnosis of dementia can lead to more targeted support and enable GPs to provide appropriate patient care management. These benefits can be explained to the patients by family and friends, as well as professionals such as nurses and social workers. They can also help the patients to overcome the fears of talking about dementia. Faith and community groups can contribute to ensuring that local dementia services are accessible to all.

This study is conducted in collaboration with King’s College London. This work is supported by The Dunhill Medical Trust [grant number R530/1116]. Our article and relevant references can be found at:

Pham TM, Petersen I, Walters K, Raine R, Manthorpe J, Mukadam N, Cooper C (2018). Trends in dementia diagnosis rates in UK ethnic groups: analysis of UK primary care data. Clinical Epidemiology (10): 949-960. doi: 10.2147/CLEP.S152647.

Two exciting studies on research participation and engagement of older adults in health promotion have recently been launched in the Centre for Ageing Population Studies (CAPS).

By Ann Liljas and Ana Jovicic

HomeHealth

In September 2014 the HomeHealth study looking at home-based health promotion interventions for older people with early frailty was launched.

Our study is funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) Programme and aims to develop and test a home-based service to promote well-being and independence for older people with early frailty, designed for the NHS.

Led by Dr Kate Walters, the HomeHealth study will design a health promotion intervention tailored for people who are beginning to become frail. This part of the study will involve a review of the current literature, in particular focusing on which behaviour change techniques show most promise in older people with early frailty. Interviews and focus groups will also be conducted with older pre-frail people, carers, homecare workers, and community health professionals. A co-design approach with older people, carers, and experts will then be used to develop the home-based health promotion intervention. The feasibility of delivering this new service within the NHS will then be tested with a Randomised Controlled Trial.

HARP

The Healthy Ageing, Research and Participation (HARP) study is funded by NIHR School for Primary Care Research.

HARP follows on from the recently completed Well-being Interventions for Social and Health needs (WISH) study (2012-2013, funded by the Medical Research Council). In WISH, we found that people aged 85 and over, older people from some minority ethnic groups and those living in rented housing (a proxy for deprivation) are less likely to take part in health promotion initiatives.

Kalpa Kharicha leads the current study which aims to provide a better understanding of the reasons why these groups are less likely to take part in health promotion and research on healthy ageing.

The study will involve interviews and focus groups with older people who belong to at least one of the three ‘seldom heard’ groups mentioned above. This will help to find out what would help them stay healthy in later life, and their views on taking part in research and health promotion.

In addition, we are also looking for experts in ageing with knowledge of recruitment and engagement of older people for health promotion interventions to take part in a short questionnaire survey. Is this you or someone you know? Please email Ann Liljas at ann.liljas.13@ucl.ac.uk for more information.

For more information about the studies, contact Ana Jovicic at a.jovicic@ucl.ac.uk.