Statement 1: People worried about possible dementia in themselves or someone they know can discuss their concerns, and the options of seeking a diagnosis, with someone with knowledge and expertise
What does this mean for care providers ?
A care worker could be the one who sees the first signs that a person is struggling with their memory, may be the one that people or their families discuss their concerns with, and is well placed to give reassurance. Care providers are not there to diagnose dementia, but everyone needs to:
- Know the early signs and what else it might be
- Encourage the person to visit their GP or arrange for this to happen
- Understand when their manager needs to be informed
It is also beneficial for all care providers to have a basic understanding of how a diagnosis of dementia is made and the first steps in seeking this in their locality. It will be helpful if everyone understands the potential benefits of getting a diagnosis but also recognises the impact that it can have on a person. People will vary as to when they feel ready to seek a diagnosis and family members may feel quite differently. If care providers have this knowledge and understanding, they will be well-placed to provide support.
Why is this important to carers ?
A person who is worried about their memory or the memory of a loved one may decide at some point – perhaps after a few months or even years – that they need to seek help or advice from a healthcare professional. This can be a difficult time for everyone, with much uncertainty, confusion and even denial too. It can be very hard to know where to start. But getting a diagnosis of dementia can be a crucial first step in obtaining the support to come to terms with life with dementia.
I am concerned that my relative may have dementia. Who can I discuss my concerns with?
Your first step should be to encourage and support the person to see their GP, and to accompany the person to the appointment. The GP should try to find out more about the problems and how they are affecting life now, for the person with dementia, for you and for other family members, carers or friends. The GP should listen and be supportive. Since 2009, a lot of work has been done to make sure that GPs are more aware of dementia and the importance of diagnosis.
The national Alzheimer’s Society charity has run a campaign called ‘Worried about your memory?’ for several years, encouraging people who are worried about their memory, or the memory of a loved one, to seek help at the earliest opportunity. The Society run a National Dementia Helpline on 0300 222 1122 so talking to someone here could be a good starting point. They have a wide range of information resources on this topic too.
What tests might be done to make a diagnosis?
Making a diagnosis of dementia is not straightforward, particularly in the early stages, because there is no definitive ‘test’ for dementia and there are many different types of dementia. Instead, a doctor – often the GP but it may be a consultant – will come to a clinical view based on a range of tests.
First, the GP will want to rule out other causes of the symptoms and may run tests, such as blood and urine tests. They may carry out a memory test, such as the MMSE (Mini Mental State Examination) which has questions that check memory, reasoning and verbal abilities, to clarify the problems a person may be experiencing.
The GP may choose to refer the person to a consultant. Many consultants who specialise in dementia work as part of a team of professionals (including psychologists and nurses) in a ‘memory clinic’. The number of clinics is growing all the time and now many areas have one – but the waiting times to be seen vary.
The consultant’s team will carry out a brief physical examination and psychological tests, and again it will be important for the person with dementia and you to share your concerns and explain the presenting symptoms. The person may be referred for a brain scan or further medical tests.
How long will it take to get a diagnosis?
It can take anything from a few months to even years before a diagnosis is made – again, this varies depending on where you live, but also on the type of tests that are carried out and the nature of the symptoms. For example, some people may actually have a relatively good memory, but have definite problems in other areas (such as language or handling emotions), and coming to a clear diagnosis in these situations can be very difficult. People who are younger (particularly those under 65) often report long delays in obtaining a diagnosis, and may live with uncertainty for years. If the person has mild symptoms, the GP or consultant may decide to monitor them for 6 months to a year to make a diagnosis.
What support is available when someone is diagnosed?
The GP or consultant should make time to explain the diagnosis and to talk about what it might mean for the future – for the person with the diagnosis and their family and friends. They should explain where to get information and advice locally about dementia care, as well as supply a basic information resource such as the Alzheimer’s Society’s booklet, ‘The dementia guide’, which is aimed at people newly diagnosed with dementia and family members and friends. It is also available in hard copy from GPs and memory clinics.
In some areas, a person with dementia will be referred to a ‘dementia adviser’. It is their job to provide someone newly diagnosed with dementia and their carer with key information about dementia and ongoing support available. Dementia advisers are located within a range of organisations: it may be the local Alzheimer’s Society branch or the memory clinic, or the local authority – it varies from area to area as to which organisation provides this service, and to whether they exist at all in any given area.
In lots of areas, short-term (for example 6–8 weeks) support groups are available for people newly diagnosed with dementia and their carers. These may be run from the memory clinic, Alzheimer’s Society or local carers centre. The sessions usually involve learning more about dementia and local sources of support, but also provide the opportunity to share experiences with others.
Some areas offer ‘cognitive stimulation therapy’ groups for people with dementia: these are carefully paced and structured sessions that usually run for 14 weeks and are led by trained facilitators, and focus on a set theme each week. Again, these operate out of a range of organisations, but might be on offer through a memory clinic or a day centre.
Counselling may be another helpful support for people newly diagnosed with dementia and carers – but again, avenues for accessing this will vary, from local voluntary sector organisations, through to NHS provision.
The Alzheimers Society site has helpful information about memory concerns and getting a diagnosis, and blogs and clips to read and watch including:
Dementia UK provide Admiral Nursing DIRECT, a national helpline and email service, provided by experienced Admiral Nurses who offer practical advice and emotional support for anyone affected by dementia. This includes care staff and carers, people living with dementia and those worried about their memory.
The Dementia Friends initiative includes an opportunity to become a dementia champion and help others understand what its like to live with dementia, as well as helpful actions that can be taken in local communities. Training is provided.
It may be helpful to watch Getting to know the person with dementia: the impact of diagnosis and to read Early signs and getting a diagnosis on the Dementia Gateway. The SCIE site also includes films on early and late onset dementia, and a wide range of general information relevant for those providing dementia care services.
The NHS Choices website includes a substantial Dementia Choices section, which covers About dementia, Symptoms of dementia, Living well with dementia, Sources of help and support. The site includes an option to search for dementia services by postcode or local authority area.
This pack from the NHS Commissioning Board and NHS South of England is aimed at carers and general practices. The resource sets out '10 key steps' to improve the quality of services for people seeking help with memory problems (steps include for example 'Improve access to memory assessment', and 'Build capacity and support in the community'). For each step the resource lists links to further resources and examples of good practice to help with implementation.
The Guideposts Trust charity's information service, Dementia Web, includes a Dementia Information Prescription service, which provides detailed information about services and support available in 19 local areas - and this list is growing all the time. If an 'Information prescription' does not exist yet for a particular area, staff will create an individualised list with up-to-date information about services in a particular local area on request - begin by calling the Dementia Web national telephone helpline on 0845 1204048.
SCIE’s Dementia Gateway has resources to help support people with dementia, including written information, films, activities and e-learning. This section looks at early signs of dementia and how getting a diagnosis of dementia can be a crucial first step in obtaining support to cope and come to terms with life with dementia. Five topics are covered in detail here: ‘Early signs of dementia’, ‘Dementia risk factors’, ‘What else could it be?’, ‘Why early diagnosis is important’ and ‘Getting a diagnosis’.
The Royal College of Psychiatrists' Centre for Quality Improvement runs the Memory Services National Accreditation Programme (MSNAP), and these standards (3rd edition, 2012) spell out the criteria by which memory services are evaluated with a view to being accredited by the MSNAP. The standards focus on assessment and diagnosis - and list a wide range of actions that memory services can and should be taking to support easy access to professional support at the point people become worried about their memory (see for example 'Joint working' and 'Liaison').
The Alzheimer's Society has run a powerful campaign called 'Worried about your memory?' since 2008. A range of online information and resources (including a short film) is available, as well an 8-page booklet called 'Worried about your memory' (translated into a wide range of languages). A smaller leaflet version has been distributed to all GP practices across England and Wales with a view to it being distributed by health professionals. The Alzheimer's Society also runs a National Dementia Helpline on 0300 222 1122, a useful starting point for basic enquiries about dementia.
The Dementia Prevalence Calculator from the NHS Commissioning Board and NHS South of England is a practical tool to help health and social care professionals (specifically carers and general practices) who are involved in joint strategic work on improving diagnosis rates. The tool can help local communities to calculate local dementia diagnosis rates, forecast local dementia prevalence, and set goals for improvement in diagnosis rates.
This section of SCIE's Dementia Gateway website looks in detail at five areas: 'Early signs of dementia', 'Dementia risk factors', 'What else could it be?', 'Why early diagnosis is important' and 'Getting a diagnosis'. Each topic is accompanied by an activity where users can apply the learning or think further about the information presented.
The Alzheimer's Society website contains an interactive map where users can click on their relevant region or enter their postcode to find out about Alzheimer's Society services in their area - which can then be used as a starting point to finding out about the wider range of dementia services within a district.