Supporting carers at the time of a diagnosis of dementia
About two-thirds of all people with dementia in the UK – that is, around half a million people – live at home (Alzheimer's Society, 2007). About half of this group live with a relative or friend (Alzheimer's Society, 2010), and many others again live close by to a carer. Carers play a critical role in supporting people living with dementia throughout all stages of the illness, but this is particularly obvious while the person with dementia is living at home.
In all there was a 25 week wait from GP referral to get to [the memory] clinic. My anxiety, frustration and stress levels were rising all the time, whilst I increased contact and support to Dad whom I felt was deteriorating rapidly.Jean Tottie, a member of Uniting Carers
This feature looks at the support that care staff can offer carers – both family and friends – around the time of diagnosis, and explains some of the challenges that carers face around this time. The focus is on carers of people with dementia who are living in the community, rather than people who live in care homes.
You may also be interested to look at one of the SCIE Open Dementia e-learning programmes which covers similar issues: Module 4, 'Diagnosis and who can help?'.
Caring before a diagnosis
For most people, the time before a diagnosis of dementia is made is a very stressful period. The carer may be aware that there is something wrong – perhaps the person with dementia begins to forget things, to get lost in familiar places, may be failing to do their job at work, or becomes unusually frustrated or angry. Relationships may become very strained as no one understands what is happening. It can be hard to face up to the possibility that this could be dementia.
The healthtalk website captures a range of carers' experiences around the time leading up to diagnosis. Both the person affected and the family may deny that anything is wrong and try to hide the problem. It may be very difficult to be clear on whether or not there really is a problem, and what exactly the problem is. Sometimes carers say that for some time they didn't recognise what was going on, simply because they were in such close contact with the person. John Bayley, wife of the writer Iris Murdoch who developed dementia, says:
One thing I think is important in the early stages of Alzheimer's is that I think if you are very close to the person, if you're the wife, the husband or even the mother or the father or the children, you may not notice things as quick as the outsider.(healthtalk website)
For more on this area, go to the feature on Early signs of dementia in the section Early signs and diagnosis or watch the Social Care TV video, 'Late onset dementia: early diagnosis and drug treatment' which looks at one couple's experience of recognising the early signs and getting a diagnosis.
The first contact with a professional
Carers may first come into contact with professionals via a number of different routes and have satisfactory or less than satisfactory experiences.
Often, a relative first approaches their GP for help when they are worried about their loved one. The GP is the right person to attend to the medical needs of both the person with dementia and the carer, who may well be tired and stressed, even ill, by this time. Often the person themself refuses to go to the GP and some GPs will insist on seeing the person before anything further can be done. But GPs have a wider role too, to help with access to services, assess the carer's capacity to provide care and provide emotional support.
If the GP feels unsure about making a diagnosis of dementia, they should refer the person for a specialist assessment. Unfortunately, many GPs do not refer to specialist services or provide patients with information about their diagnosis or prognosis. Some GPs are not sure that an early diagnosis is a good idea. In most parts of the UK, only 40 per cent of people with dementia have been given a diagnosis (Alzheimer's Society, 2011). For those who do receive a diagnosis, it can be a drawn-out process, sometimes taking years.
As a result, the carer may feel that they have had to struggle for a long time before anyone takes an interest in their problems and the problems of the person with dementia. By the time you meet a carer, understandably they may be quite frustrated and impatient with the health and social care system and you will need to take time and care for their trust in you to develop.
The South West Dementia Partnership has published a range of resources to assist GPs and primary care professionals to improve the recognition, diagnosis and management of dementia. One of the resources is a briefing, 'Improving dementia care in primary care: 10 key steps for general practice'.
To diagnose or not?
Families generally find that being given the diagnosis offers real benefits: they now have an explanation for the person's poor memory or unusual behaviour, and they can seek help and make plans for the future. For the person with dementia, being given a diagnosis can prompt a time of decision-making, and can mean getting access to medication and being able to take positive steps to maintain physical health and social activities.
Sometimes a person with suspected dementia, or their family, wants to avoid going through a process of getting a diagnosis. It may be that they feel afraid, or they feel they would rather not know, or that it won't make any difference to the situation. It is important to support the person and their family through this time.
Ultimately, the consensus is that people with dementia have a basic human right to know their diagnosis. While professionals need to be sensitive about how much information they give at each consultation, and how they share it, the person can only exercise autonomy and choice about their life and make informed decisions if they have all the information available. Increasing rates of diagnosis and pressing for early diagnosis are now important goals of government policy in England, Northern Ireland, Scotland and Wales.
Information for carers
At the point of diagnosis, the amount of information that a carer can take in will vary. Some people with dementia are given the diagnosis in a simple letter and asked to go back to the memory clinic in a year's time. In other cases, the health professionals may share the diagnosis with a person with dementia, but then the person forgets, and also forgets to tell their family. Sometimes families are given written and DVD materials, and contact details of voluntary organisations, self-help groups, and statutory services on offer. Sometimes the carer is included in the process; in other cases they are excluded on the grounds of patient confidentiality. Often people don't see anyone else for support or follow-up at the time of diagnosis. This can add to the frustration of the situation and leave people feeling very much 'on their own'.
The information and support that is offered must be adapted for each individual situation and person. Some people want to know everything. Others need time to think before they can bear to even look at a leaflet. You need to be sensitive to this when starting to offer support. Listening is really important.
Carers' organisations and support groups – some specifically for carers of people with dementia, some general carers' groups – exist in some form in most parts of the UK, but they vary, so it is important to do some homework and find out what is available near you. In that way you can be most useful and provide good information at the right time.
In some areas, carers and people with dementia are able to go to 'post-diagnosis support groups', six- or eight-week courses, perhaps run by a voluntary organisation or by the local memory clinic. These groups offer information and support for both the person with dementia and carers, and can be a critical first step for linking families with support services.
Being able to drive a car is a very important practical issue, particularly in remote and rural areas, and may even affect a person's self-esteem. Often doctors are reluctant to raise the issue and relatives find it very hard.
It is important that people with dementia and their carers are told at the time of diagnosis, that they are entitled to an assessment of their driving competence before their licence is taken away, and there are driving cessation groups that people can attend to discuss the issues. As with many issues in dementia, acknowledgement of the issues and discussion can help more positive outcomes.
Financial help for carers
Carers save a huge amount of public money, but it costs them both in loss of earnings and increased domestic costs, such as heating and transport, new equipment and so on (Carers UK, 2011). It is important to make sure that carers collect as many of the allowances that are available as possible to ease the financial burden of caring.
Financial benefit systems are complicated. You might not be a benefits expert yourself, but do point carers to those who can help. Organisations such as the Alzheimer's Society or Alzheimer Scotland provide advice and support in working out what is available, as will a range of local organisations (the local authority, a Citizen's Advice Bureau or other local voluntary organisation). The National Benefits Enquiry Line is a free telephone helpline (call 0800 88 22 00 8am-6pm on weekdays), and this could be a good place to start looking for advice too.
Some basic benefits to find out about include:
- Attendance Allowance
- Carer's Allowance
- Pension credits
- Other general benefits such as income support, the social fund, housing benefit and council tax discounts and benefit.
Access and download additional resources
Further reading Open
Afiya Trust (2008) Beyond we care too: Putting black carers in the picture, London: Afiya Trust.
Alzheimer’s Society (2013) ‘People with dementia living alone’, online information.
Alzheimer’s Society (2012) ‘Carers: looking after yourself’, Factsheet 523, London: Alzheimer’s Society.
Alzheimer’s Society (2007) Dementia UK, London: Alzheimer’s Society.
Armstrong, M. (2001) ‘The pressures felt by informal carers of people with dementia’, Nursing Standard, vol 15, no 17, pp 47–53.
Carers UK (2011) The cost of caring, London: Carers UK.
Dementia Action Alliance (2010) National Dementia Declaration, London: Alzheimer’s Society.
Dementia Services Development Centre (2009) Ten helpful hints for carers, Stirling: Dementia Services Development Centre University of Stirling.
healthtalk website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementia, getting a diagnosis and becoming a carer. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
Hirst, M (2004) Health inequalities and informal care, York: Social Policy Research Unit, University of York.
Nolan, M., Ingram, P. and Watson, R. (2002) ‘Working with family carers of people with dementia’, Dementia, vol 1, no 1, pp 75–93.
Social Care TV: the video ‘Late onset dementia: early diagnosis and drug treatment’.
South West Dementia Partnership (2012) Improving dementia care in primary care: 10 key steps for general practice, online guide.
Tesco, Alzheimer’s Society and Alzheimer Scotland (2011) ‘Mapping the dementia gap’, online information, London: Alzheimer’s Society.
Whitman, L. (2009) Telling tales about dementia, London: Jessica Kingsley Publications.
Useful links Open
A guide to psychosocial interventions in early stages of dementia
The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.
Carers UK is the lead campaigning organisation for carers in the UK. This website has national and local information about services and support available to carers, and issues related to caring.
Carers’ Call to Action
The Carers’ Call to Action was launched in November 2013 as part of the work of the Dementia Action Alliance: it is calling for individuals and organisations to sign up in support of greater acknowledgement and involvement of carers of people living with dementia.
This website was launched in 2014 and is aimed at family carers of people living with dementia. It includes around 100 short video interviews with carers talking about how they have developed ways of coping with everyday problems. The videos are grouped into four sections: 'Understanding dementia', 'Daily life', 'My relationship', and 'Looking after myself', and presented alongside other online resources on the topic.
This website has been developed by and for carers of people with dementia as a way of highlighting online resources that may be helpful for carers of people with dementia. It includes personal stories, listings of helpful websites and explanations of where to go for help and support.
This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.
The charity Dementia UK promotes and develops Admiral Nursing nationally. Admiral Nurses are specialist mental health nurses who focus on the needs of carers and families of people with dementia, but they are currently only available in limited parts of the UK (see Dementia UK’s website to find out where). The charity runs a national telephone and email helpline, Admiral Nursing DIRECT, staffed by Admiral Nurses and available for anyone affected by dementia, including professionals. Its website includes a long list of ‘Common questions we get asked’ with helpful answers, such as ‘We’ve been told dad has dementia – now what?’.
Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer’s Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.
This is me
This is a leaflet developed by the Alzheimer’s Society for people with dementia. It was originally developed for people with dementia who were going into hospital, but it has been broadened to be suitable for any person with dementia who is receiving professional care in any setting. The leaflet can be filled in by the person with dementia or a family member, and it covers things such as preferences, likes, dislikes, interests and other information to help a person cope in an unfamiliar environment. The Scottish Government and Alzheimer Scotland have launched a similar form, Getting to know me.
TIDE: Together in dementia everyday
This is a new national involvement network for family carers of people with dementia, which aims to involve carers in supporting other carers, influencing policy and improving local services. The network will offer a development programme designed by carers to pass on skills and confidence to other carers.
Triangle of Care – carers included: a guide to best practice for dementia care
The Carers Trust and The Royal College of Nursing (RCN) have produced this guide for care services on involving family carers in the care of people with dementia.
Related pages from this section Open