NIHR Highlight Supporting carers of people with dementia
Published May 2016
Dementia is becoming more common as we live longer. Caring for people with dementia is demanding, with increased dependency as the disease progresses and behaviour which is often challenging.
Many carers are older and may have their own health problems as well. We need to know more about the needs of carers and which kinds of support are likely to be most helpful. To find out about taking part in dementia research visit Join Dementia Research.
Published: May 2016
The findings boiled down, alongside practical questions for healthcare professionals and patients.
How can we help reduce depression and anxiety in carers?
How common are continence problems and how do carers cope?
A study looked at the impact of regular walking on the symptoms of dementia.
Managing issues such as stroke, diabetes and visual impairment, alongside dementia.
Case management can lead to better outcomes for people with dementia and their carers - but the picture is mixed.
of people with dementia live at home.
of carers suffer from depression and anxiety.
estimated amount that unpaid carers could save the UK.
Unpaid carers provide much of the day to day care for people with long-term illnesses. Dementia is a common problem and the condition can present particular challenges for those nearest to them. This can include challenging behaviour and confusion, as well as a range of other physical and mental health problems.
The progression of dementia can be slow and uncertain, with caring responsibilities which can extend over many years. Carers tend to have poorer levels of physical and mental health than those without caring responsibilities. One study indicated that a third of dementia carers experienced clinical depression or anxiety.
There is some evidence that when carers are well supported, they provide better care to the person they care for and report better outcomes themselves. But carers may not seek the support they need. An earlier review found that women taking on heavy carer responsibilities made less use of general practitioner services than expected.
While there are new responsibilities for local authorities and for health professionals to identify the needs of carers, it is not always easy to provide the support they need.
What did the studies find?
- A large UK trial of a structured coping programme for carers helped to reduce anxiety and was cost-effective
- An evidence review showed that carers need help to address their negative feelings and psychosocial needs, as well as more practical support
- A large population study showed that people with dementia were more than twice as likely to experience incontinence as those without dementia, but carers were often reluctant to seek help
- A trial showed that regular exercise with the person they were looking after helped carers (although did not produce expected benefits for people with dementia)
- A study showed that people with dementia experience high levels of other conditions like diabetes and stroke, but often have poorer access to monitoring services (like foot and eye checks in diabetes clinics). Care from different teams and services is often poorly coordinated, with the burden falling on carers.
- A survey showed that carers often had different views to health and care professionals on what factors precipitated a crisis (carers rating continence problems more highly than staff) and what support helped to prevent and manage these
- A review of evidence on case managers to coordinate care for people with dementia showed mixed results with some possible benefits in reducing burden on carers.
Questions to ask
- Have you been given a clear diagnosis and what you might expect in the next few months and years?
- How do you feel most of the time? What support would help you in looking after your relative, partner or friend with dementia?
- Would you benefit from practical tips on coping with challenging behaviour? Or talking to someone about what you find difficult, including feelings of guilt and shame?
- Have you asked for help with continence problems?
- Could you try regular walks with the person you are looking after?
- What kind of support would be most helpful to you in a crisis and do you know what services are available?
- Might there be other health problems worth checking for you and the person you look after?
For GPs, community nurses, care support works and others
- Do you know which of your patients looks after someone with dementia?
- What kind of support services can you access in the way of home help, respite and other services?
- At every contact with a carer (consultation or home visit), ask if there are continence problems. Do you know what kinds of support your local continence service or nurse provides?
- At every contact with a carer, ask how they are feeling generally. Can you refer carers who need some form of psychosocial support via your IAPT?
- When seeing someone with dementia in your practice or at home, what other possible health problems need checking, for instance eyes, feet or teeth? Can you make longer appointments for them?
The need for effective interventions to support carers in their challenging role is well recognised. But there is little reliable evidence on the effectiveness of different kinds of support.
The NIHR funded a trial to find out if a psychological intervention, carefully specified in a manual and delivered to family carers by trained psychology graduates, would reduce their depression and anxiety. It also tested whether it would be cost-effective to roll out across the NHS. In this study, 260 carers were randomly allocated to the new programme or care as usual.
The new programme covered topics such as managing difficult behaviour, accessing support and planning for the future. This was adapted from a US programme and was delivered to individuals across eight sessions. The features - individual rather than group therapy, more than six sessions - were highlighted as important factors for success in the evidence. Those providing treatment as usual were expected to follow NICE guidelines, which included some form of talking therapy and support for carers.
Results showed that those without the support programme were seven times as likely to be depressed two years later. It was also cost-effective; the implementation costs for this manual-based training programme, if rolled out to the wider service, compare favourably with equivalent costs of providing talking therapy courses for carers by more expensive clinical psychologists.
Providing effective support to help carers cope is important. This is needed to make daily life easier or more bearable for carers and to keep people with dementia safely at home. This was one of the largest study of carers in an experimental study of this kind. It shows encouraging results and will strengthen the body of knowledge in this area, which is limited at present.
Around 90% of people with dementia exhibit some form of challenging behaviour, including states of agitation and aggression. This is one of the most challenging aspects of care. As well as causing distress to carers, it can lead to inappropriate medication or hospital admission.
Different strategies including behavioural interventions are recommended to cope with these behaviours, but carers respond to these in different ways. This review aimed to find out what evidence there was on how carers experienced challenging behaviour and how they might respond to different kinds of support.
The NIHR has funded a programme of research on managing challenging behaviour by people with dementia in the community and care homes. As part of this work, a review was undertaken of research exploring the needs and adjustments of carers of people with dementia. Twenty five high quality studies were identified. The team was able to draw out some high-level explanations and lines of argument from this evidence, despite the variety and complexity of studies.
A key finding was the level of unmet need and distress among many carers who struggled to adjust to their new reality. This included feelings of shame, stigma and embarrassment around anti-social behaviour. Other studies highlighted the sense of loss and detachment from the person with dementia and fears of an inevitable loss of identity. For some, a feeling of catastrophe affected the carers’ ability to benefit from support programmes for dealing with challenging behaviour.
These were complex and nuanced insights, but some practical pointers emerged from the review of published research. Carers will respond differently to interventions that manage challenging behaviour, depending on a range of factors including the nature of attachment and relationship to the person with dementia.
In a related study by the team, analysis showed that psychosocial factors such as guilt and feelings of competence could account for much of the distress associated with challenging behaviours and interventions should address these. Carers’ needs were likely to vary and support should be personalised as much as possible. An important feature, highlighted by this review, was the skilled support for carers to adapt to new ways of communicating with their relative and being realistic about expectations.
The review reveals the elements of loss and shame which carers experience. The authors suggest that support programmes for carers, which often focus on practical tips and strategies, should also consider some element of psychosocial support to address some of their hidden needs, even if this is not actively asked for by carers.
Problems with continence are often cited as one of the worst aspects of caring and can lead to people with dementia being admitted to care home or hospital. However, we do not know very much about how common it is or how carers cope.
An NIHR study started with a review of evidence about incontinence and its management for people with dementia living at home but found little reliable evidence on the size of the problem. The authors therefore carried out a population-based study which was the largest of its kind. It used information from a large database of consultation records from nearly 500 practices. The analysis tracked 55,000 people with dementia over ten years and four times as many people in the general population of the same age and with similar general health.
The study found that there was at least a doubling of the rate of incidence of faecal or urinary incontinence among people with dementia than those without. In addition, people with dementia were more than twice as likely to have a urinary catheter. This could be investigated further, as use of catheters can be uncomfortable and lead to infection.
There were also higher rates of medication to manage incontinence for people with dementia. The team went on to look for evidence on effective strategies to manage continence for people with dementia living at home, including non-drug or surgery approaches. However, there was no high quality research on effectiveness of different strategies. They also reviewed local clinical guidelines for professionals on the management of incontinence and found little specific advice for people with dementia living at home and their carers.
An important part of the study was qualitative research with a number of stakeholders, including carers. Research with 32 carers gave important insights into the problems of dealing with incontinence. Carers were often reluctant to seek help for these issues, in part to protect the dignity and personhood of the person with dementia. Help from primary care professionals was variable. Effective containment of excreta was identified as a major problem, confirmed in another study tracking continence problems in dementia patients and their carers over time. Other work with health professionals identified lack of confidence and knowledge in providing appropriate continence advice and support.
These information gaps led the team to develop, with participation of experts and carers, a range of tools and approaches for better continence support. This included testing the appropriateness of continence pads to contain excreta and developing and testing a continence assessment tool for use by community nurses and other primary care professionals.
This NIHR study shows just how common continence problems are – about twice that of the general population. Yet carers are often reluctant to seek help. A key message from the study was for health professionals to ask at every contact about continence problems and how they could help.
There is increased pressure to find forms of support other than drugs to manage some of the difficult symptoms of dementia, like agitation and disturbed sleep. Possible approaches include music therapy, behavioural interventions and exercise.
An NIHR study started with a literature review to assess the evidence on exercise. It found limited, but promising, evidence to support the use of exercise to address the behavioural and psychological symptoms of dementia. But existing studies were often small, exercise was often combined with other kinds of support and research did not make it clear what kinds and levels of exercise provide best results.
To address this, the team designed a randomised clinical trial to test a tailored walking programme for pairs of people with dementia and their carers. Each pair walked for at least 30 minutes, five times a week, with initial support from an exercise coach. This was a reasonably large trial of this kind, with 131 pairs of people with dementia and carers. Outcomes were tested after six and twelve weeks.
The study found no clinical benefits to people with dementia from regular walking but they did find that caregiver burden decreased significantly. It was not clear whether this was an effect of the exercise itself or of positive contact between the person with dementia and their carer. The research provides interesting new evidence on reducing carer burden.
An online survey of health professionals and carers was carried out to understand different perspectives on the causes of dementia crisis and the most helpful kinds of support. This was the first large-scale survey of this kind. Crisis situations happen when the carer cannot cope or there is an exacerbation of behavioural, mental or physical health problems.
These crises can lead to the person with dementia being admitted to hospital or care home, some of which may be prevented by better support. There were 719 responses to the survey, the majority from healthcare professionals (562 or 78.2%) but also 54 carers (7.5%). The carers were grouped as consumers together with the small number of respondents who were people with dementia (4 or 0.5%) and those working in the voluntary sector (12 or 1.7%).
Results from the survey showed important areas of agreement and differences between the different stakeholders. In terms of causes or triggers for crisis situations, there was consistency in ranking highly factors such as wandering, aggression, falls, infection, carer burden and environment. This reinforces existing evidence on causes of crisis, however, there were also some differences. Compared with staff views, carers seemed less concerned about aggression and more concerned about level of impairment. Carers also rated continence more highly than professional staff as a reason for precipitating crisis. They rated abuse, neglect and alcohol consumption as lower risks than professionals in the environment. They also did not think involving people with dementia in future care planning decisions was as important as health professionals.
In terms of interventions to manage crisis, there was reasonable agreement across all stakeholders of the importance of emergency contacts and care, well-trained home care staff, communication equipment and access to respite services. Reliance on emergency departments in crisis, which may have other harmful effects (longer hospital stays, risk of infection, confusion) raises the need for services to explore the need for alternative community-based provision. In terms of preventing crisis, education and support for carers, as well as appropriate home support, were ranked highly by all.
This survey is part of a wider NIHR programme of research to develop and test appropriate packages of home support for people with dementia in crisis.
It is known that people with dementia often have other health issues, such as diabetes. Dementia is also associated with cardiovascular risk factors, like hypertension. These different conditions can interact in complex ways and the presence of dementia will affect the ability of individual to manage other diseases. The role of the carer is crucial.
A recently published NIHR study has looked into the issue of comorbidities for people with dementia, with a particular focus on stroke, diabetes and visual impairment. This included a scoping review of published evidence, analysis of population databases and qualitative research with carers, people with dementia and healthcare professionals.
From these different sources, the team found that that a substantial proportion of those living with dementia have other serious health problems - often more than one at the same time. Population comparisons showed that people with dementia had slightly higher rates of comorbidity than others of similar age without dementia. Despite these high rates of multiple health problems, services and teams were often set up to deal with single conditions, with poor communication between different services.
The carer often provided the only point of coordination and information about the health needs of the person with dementia. The evidence suggests that people with dementia and diabetes may not always get regular eye and foot checks. The reasons for this were not clear. Interviews and focus groups with professionals showed they were often not aware that people attending diabetes or similar clinics had dementia and what extra help they might need. Carers (and health professionals) noted the need for more time in consultations to discuss health problems and how to manage them.
The study used consensus methods to identify some areas where practice could be improved. This included some practical suggestions particularly relevant to carers, from including family carers in correspondence when booking appointments to having systems for clinics to identify people with dementia and make longer consultation times.
An NIHR programme reviewed published evidence on case management approaches. This is where a professional, such as a nurse, coordinates and actively manages care for individual patients. The review found thirteen trials, eleven of which involved carers.
The review showed some evidence that case management led to better outcomes for people with dementia and their carers - but the picture was mixed. For instance, there was some evidence from good quality studies that case management led to reduced admissions to care homes and overall healthcare costs in the medium term, but longer follow-up showed fewer benefits. There were uncertain impacts on patient depression or functional abilities.
Overall, it was quite difficult to extract actionable findings from the research. This is largely because of differences between studies in terms of the interventions and how they were measuring impact. As an example of the diversity of interventions studied, the case manager in the included studies varied from registered nurse, district nurse, nurse specialist, social worker, occupational therapist or psychiatrist. Studies came from Europe, Canada, US, India and Hong Kong. Only one study came from the UK, which limits the relevance given different ways of organising health services.
Although some of the findings are difficult to interpret because of their diversity, this review is helpful in describing the range of case management initiatives, their goals and outcomes.
The role of case managers in coordinating care and other kinds of home support are also being explored in current live NIHR studies, as well as important research in areas from managing sleep disturbance in people with dementia to the role of specialist nurses in supporting dementia carers.
This Highlight is based on five NIHR studies.
Livingston G, Barber J, Rapaport P, et al. START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 2014;18(61).
Management of Challenging Behaviour in dementia at home and in care homes [Esme Moniz-Cook Due to publish, end of 2016] RP-PG-0606-1067:
Published outputs featured in this Highlight:
Feast, Martin Orrell M, Charlesworth G, Melunsky N, Poland F and Moniz-Cook E (2016). Behavioural and Psychological Symptoms in Dementia (BPSD) and the challenges for family carers: a systematic review. British Journal of Psychiatry Mar 2016, http://dx.doi.org/10.1192/bjp.bp.114.153684
Feast, A., Orrell, M., Russell, I., Charlesworth, G., & Moniz‐Cook, E. (2016). The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia. International journal of geriatric psychiatry Feb 2016 http://onlinelibrary.wiley.com/doi/10.1002/gps.4447/abstract
Bunn F, Burn A-M, Goodman C, Robinson L, Rait G, Norton S, et al. Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem). Health Serv Deliv Res 2016;4(8) ) http://www.journalslibrary.nihr.ac.uk/hsdr/volume-4/issue-8#abstract
Iliffe S, Wilcock J, Drennan V, Goodman C, Griffin M, Knapp M, et al. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Programme Grants Appl Res 2015;3(3) http://www.journalslibrary.nihr.ac.uk/pgfar/volume-3/issue-3
Featured in this Highlight:
EVIDEM-C: promoting continence and managing incontinence with people with dementia living at home [Lead, Drennan V]
EVIDEM-E: exercise as a therapy for behavioural and psychological symptoms of dementia – a randomised controlled trial of clinical effectiveness and cost-effectiveness [Lead, Warner J]
Support at Home - Interventions to Enhance Life in Dementia (SHIELD) [Martin Orrell]
Published outputs featured in this Highlight:
Ledgerd, R., Hoe, J., Hoare, Z., Devine, M., Toot, S., Challis, D. and Orrell, M., 2015. Identifying the causes, prevention and management of crises in dementia. An online survey of stakeholders. International journal of geriatric psychiatry.
Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toot S, Challis D, Orrell M. Case management approaches to home support for people with dementia. Cochrane Database of Systematic Reviews 2015, Issue 1. Art. No.: CD008345. DOI: 10.1002/14651858.CD008345.pub2.
Note that this programme included an evaluation of a carer support programme. When published, results can be accessed on the programme website https://www.ucl.ac.uk/shield
How does this fit with current guidance?
The Carers Act, enacted in April 2015, places obligations on local authorities to assess the needs of carers for support and advice. Health professionals also have responsibilities to identify carers and their needs. These are set out in NICE quality standards for dementia in 2010. This states that carers should be offered an assessment of emotional, psychological and social needs. Where appropriate, they should be offered psychological therapy. Care plans should be tailored to individuals but support might include individual or group psychoeducation; peer support groups; further information and training.
Other relevant evidence
There is not very much high quality evidence relating to informal carers of people with dementia. This highlight has not systematically searched evidence relating to dementia carers. A helpful overview was provided recently on this topic (Centre for Reviews and Dissemination 2014). This highlight complements that review, focusing on a few NIHR studies published since 2014 which have thrown light on different aspects of dementia carers.
Recent systematic reviews in this area have found little reliable or relevant research. For instance, a 2014 Cochrane review on respite care found four trials (three from the US, one from Canada), but these were low quality with small studies, short follow-up periods and high risk of bias (Maayan 2014). This made the study findings inconclusive. Problems in the quality and reliability of available evidence has driven recent NIHR and other initiatives to fund new research. This includes a themed call across NIHR programmes on dementia research in 2011 and further activity. Current live NIHR research of particular relevance to dementia carers and addressing some of the uncertainties identified in this report include:
- a five year programme to evaluate different forms of home support for people with dementia and their carers, including economic assessment https://www.journalslibrary.nihr.ac.uk/programmes/pgfar/DTC-RP-PG-0311-12003/#/
- research assessing strategies for family carers to manage sleep disturbance in people with dementia http://www.nets.nihr.ac.uk/projects/hta/1422006
- a study on managing faecal incontinence of people with dementia http://www.nets.nihr.ac.uk/projects/hta/137501 ;
- evidence on providing diabetes care for people with dementia http://www.nets.nihr.ac.uk/projects/hta/1313803 ;
- a study of Admiral nurses, specialist nurses providing support for family carers of people with dementia http://www.nets.nihr.ac.uk/projects/hsdr/1415407.
This highlight features studies which address health problems of people with dementia (such as continence and comorbidity), as well as carer needs. These are often difficult to separate. There is a wider evidence base of treatments and services for people with dementia in the community. This highlight focuses on recent NIHR studies likely to be particularly relevant to family and informal carers.
Other references and resources
Ablitt,. A, Jones, G.,V, Muers, J. (2009). Living with dementia: a systematic review of the influence of relationship factors. Aging and Mental Health 13(4):497-511.
Alzheimer’s Society (2014). Dementia UK: Second Edition – Overview. [Prince M, Knapp M et al]. https://www.alzheimers.org.uk/dementiauk
Arksey H and Hirst M. (2005) Unpaid carers' access to and use of primary care services, Primary Health Care Research and Development, 6, 2, 101-16.
Centre for Reviews and Dissemination. Dementia carers. Effective information, support and services to meet their needs. University of York. Effectiveness Matters. 2014
Maayan N, Soares-Weiser K, Lee H. Respite care for people with dementia and their carers. Cochrane Database of Systematic Reviews 2014, Issue 1. Art. No.: CD004396. DOI: 10.1002/14651858.CD004396.pub3
Mahoney R, Regan C, Katona C, Livingston G. Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr Psychiatry 2005;13:795–801.
NICE. Dementia Quality Standard (QS1). London: NICE, 2010
Schoenmakers B, Buntinx F and DeLepeleire J (2010). Supporting the dementia family caregiver: the effect of home care intervention on general well-being. Aging and Mental Health, 14(1), pp.44-56.
To find out about taking part in dementia research visit Join Dementia Research.
By the time my mother died last year, my brother and I had built up a lot of know-how about caring for someone with dementia.
While our father was still alive, most of the day-to-day caring work fell to him, as both my brother and I lived some distance away. Mum had had long term mental health issues and her dementia emerged quite slowly, building up into a major problem for Dad. Dad was very stoical, wanting to deal with the situation on his own and this made him resist help that might have been very valuable.
Dad was already experienced in dealing with Mum’s mental health problems but the dementia increased the demands upon him. Although people talk more freely about mental health issues and dementia today than a generation ago, he still felt a taboo about Mum’s mental health and this strengthened his sense of pride, duty and the need to keep up appearances.
Looking back on it all now, I can see that Dad didn’t have a very clear understanding of Mum’s condition, how it might progress and what it might require of him. Like so many carers, he coped by not looking too far into the future and he just kept on coping, even as things deteriorated. I am sure that Dad felt fearful, anxious and angry about being Mum’s carer but it didn’t seem as though the local health system had a good system for looking after him.
Eventually Dad’s own physical health problems became so serious that he could no longer look after Mum at home and we agreed on a residential care home for her, where she outlived Dad by several years. The dementia was running its course but some of Mum’s deterioration was made worse by factors which I now think could have been tackled better, both at home and in the care setting.
Mum had mild urinary incontinence, so she had a tendency not to drink enough and the resulting dehydration led to repeated urinary tract infections and some nasty bouts of toxicity, causing acute confusional state. If careful attention had been paid to keeping Mum’s fluid intake up, this might have been avoided.
Mum’s dentures didn’t fit well and this made it very difficult for her to eat. With many pleasurable aspects of life all but disappeared, it would have been great to have maintained her enjoyment of food but in practice this became very difficult, to the extent that she had to be coaxed to eat enough. Early attention to her dental care would have paid dividends.
For other people, early checks on hearing and eyesight, perhaps when the person can still respond to standard tests, could be valuable.
What would I advise someone just starting to face the challenge of looking after someone with dementia? First, have a detailed discussion with the clinicians - GP, elderly care consultant, psychogeriatrician – and make sure you understand the diagnosis and how the disease is likely to progress.
Second, don’t feel you have to keep up appearances all the time. Take whatever help you can obtain and be prepared to talk to professionals and supporters about how you feel. Caring for someone with dementia is huge commitment and it’s OK to feel angry or sad about what is happening. Find a way to look after yourself and if you are offered referral to services such as counselling or a support group, don’t dismiss the chance to get some help.
Third, you are going to have become skilled at finding out how local services work and then negotiating with them to get the best that you can for your loved one. If your cared-for person is in residential care, you will still be their advocate and may still have to negotiate the provision of services, which vary across the country.
Lastly, don’t feel that your loved one going into residential care means you have failed. If you have reached the point at which it is no longer feasible for you to care at home, a good residential setting will be the kindest and safest choice and may enable you to look after yourself better.
I felt very much on my own. I cared for my mother at home for more than six years and continued to be her carer and advocate for four further years when she went into residential care. I was the co-ordinator of my mother’s care and there was no obvious guidance as to how to go about this or what help was available.
I wish now that I had felt able to seek out more support and that it had been more obvious how to access it. What I really needed was a lot more care for my mother at home and some respite care to give me a break but as this wasn’t offered, I struggled on, as many carers do.
Initially, Mum was well supported, in particular by the people who ran the memory clinic that she attended. They also gave me emotional support, even when Mum no longer attended the clinic but otherwise I didn’t feel there was any support. The clinic staff were very good to me but everything else felt like a struggle.
I don’t think I fully exploited the support that social services may have been able to give – I believe I should have explored that sooner.
I did discover that you had to fight for any sort of support from them. But there’s also no getting away from the fact that it is hard to ask for help. I suppose this is what the researchers mean by ‘the hidden needs of carers’. It certainly would have been good if there had been some routine system for the people who were caring for Mum to also check out my needs.
I would also advise people to talk to at least one of the charities that support people in this situation: the Alzheimer’s Society or perhaps Dementia UK or the Stroke Association. They have a range of information resources for people caring at home and - if you are able to get to them – local support groups may prove useful.
As I was Mum’s sole carer and working full time eventually it became unrealistic to continue to care for her at home. Regrettably, I didn’t see her transition into residential care as a positive move, largely because the quality of what was available was generally poor and indeed in one place actually unsafe because of the mix of the residents, the staffing ratios and the skills of the staff. So I would advise anyone looking for residential care for someone with dementia: look very carefully and critically at the care facility; take someone with you who knows how these places work; ask searching questions about the way the facility is staffed and managed, especially as the staff’s skills are so crucial; be prepared to be a strong advocate for your person’s needs. When it comes to care, nothing is volunteered, you have to ask.
Don’t forget, too, that your needs as a carer don’t stop once your loved one has died. You may be left with feelings of guilt and anger and you may even feel anxious that some form of dementia may affect you later in your life. Though health and care services see the case as closed once the person with dementia has passed on, you still need to take care of yourself, so seek out the support you need.
Researchers can have such a positive impact on people living with any disease. Researchers give people hope. However, the positive effect can be cancelled out if negative images and language appear in the reports produced.
Words matter and are a powerful medium that can change the well-being of people. As someone living with dementia, I don’t want to read a report which implies how much of a 'burden' we are or how ‘challenging our behaviour is’ for loved ones. If 'carers' and healthcare professionals continually see this type of language, there's no doubt they will think this is an inevitability of the disease.
On the flip side of the coin, if they were to see documents and research on 'How best to understand and support a loved one with dementia’, rather than 'How best to cope with challenging behaviour' - wouldn't this affect the way they think of dementia in a more positive way?
Language is so key in affecting people's reaction to a situation, for both healthcare professionals and the public alike. If staff had more awareness and understanding of why someone is behaving in such a way, that behaviour might not occur in the first place.
Some people have questioned our insistence on promoting the notion that living well and positive language is possible, as this detracts from the struggles we experience. My answer to those critics is that we have no control over how our disease progresses - we know it’s not a good outcome, so why dwell on something over which we have no control. Why not instead focus on the positives to make this bummer of an existence, as good as we possibly can and focus on living as well as we can.
Remember, words matter……
Author: Wendy Mitchell. Patient
The six programmes of research described in the NIHR Highlight on supporting carers of people with dementia are large and important studies that have been funded by NIHR, which in itself reflects the importance of dementia care in the national research agenda.
In the past, studies have often focused on simply describing the issues that carers face and the pressure that they are often under. More recent research seeks to be more active and to evaluate interventions that will influence practice, support carers, and lead to better outcomes for people with dementia themselves.
In considering this group of studies, the first question may be to ask whether there is a common message arising from their findings.
Overall, I think the studies demonstrate that there are no quick wins, no panaceas, no single thing that dramatically changes the situation of carers or the lived experience of having dementia. Instead, this body of work is about incremental improvements.
For example, providing a manual-based training programme for carers is moderatelyeffective and also cost-effective. Probably within the group of people who participated, some of the carers found it very useful but others may have found it of little or no use. It certainly seems as though proactively asking questions about continence with families is a good idea as they may be embarrassed to raise the issue themselves.
There are several audiences for the research presented in this Highlight. These include the research community and the funders of the research. The findings are internationally relevant: dementia is a global problem and the UK has several world-leading research groups in the field of psychosocial interventions in dementia. Other people who will be interested are clinicians working in this area, both those who work in specialist practice but also GPs, community nurses and care home staff. There is also a public audience. They probably aren’t going to read the scientific journals where these findings are published but they do need to know what is going on, how their taxes are being spent on research, and also what glimmers of light there are in the well of dementia.
I have some other questions for this group of studies. What do they tell us to do differently? What research is needed next? And, are there any gaps, anything that’s missing? Some of the studies, for example, the exploration of carers’ perceptions of crises have already led to further research that is now underway. In the case of the crisis study, this is to develop resources to help professionals and carers to be better prepared when things suddenly change. A common thread between nearly all the studies is that to improve matters requires better, clearer communication with family carers.
One issue that remains unresolved despite quite a lot of research is the question of how care should best be organised. The literature review of case management described here had mixed findings. Under some circumstances, this model works well but this does not always happen. It’s a bit like integrated care, a phrase that people love to use. On the surface, what’s not to like? The opposite, presumably, is chaotic, fragmented care, and that doesn’t sound good. Yet it is surprisingly difficult to find good evidence of integration working well. There is no evidence that attempts to achieve integrated care by organisational change have been successful. I suspect that what matters more is not belonging to the same organisation but having an environment where relationships between key people are allowed to flourish.
Finally, the missing element is what about the people with dementia? If carers and professionals don’t always agree about what constitutes a crisis, what do people with dementia think? I expect that patient and public involvement will start to shape research and practice much more over the next few years - for example, agenda setting through the James Lind Alliance. I’d welcome that. I hope that bodies like Dementia Alliance International will become more influential in setting the agenda and working alongside researchers to make a difference.
Author: Professor Tom Dening. University of Nottingham.