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Eating and drinking difficulties in dementia: what should we be aware of when discussing the difficulties with people with mild dementia?

Megan Armstrong17 June 2021

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.

 

Thinking about how we support family carers of people with dementia in light of carers week

Megan Armstrong9 June 2021

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.

Families struggle to know what’s best for older relatives with dementia during COVID-19

Nathan Davies22 May 2020

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.”

A comparison of new dementia diagnosis rates across ethnic groups in UK primary care

Nathan Davies31 August 2018

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).

Figure 1 Rate of new dementia diagnoses per 1,000 person-years at risk (PYAR) by calendar year in The Health Improvement Network (THIN) UK primary care database.

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.

PCPH research team conducts new multi-disciplinary studies on older people

Rosie Webster6 October 2014

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.

HomeHealth logo

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.