Accepting the diagnosis of dementia

How would you respond if you had just been told that you had dementia? Reactions to a diagnosis can vary from shock, fear and anger to sadness, despair and denial. Some people become withdrawn, stop going out and become reluctant to see family and friends. This can deeply upset those closest to them who don’t know how to help.

Many people diagnosed with dementia believe that very little can or will be done for them, particularly in the early stages. But the potential for support – enabling people with dementia and their carers to face the challenges of a diagnosis and lead a meaningful and positive life – is high and can do a great deal to challenge the stigma that is sometimes attached to dementia.

If we don’t accept it, we allow denial a foothold, and there is simply no time for denial with this disease. Alzheimer’s does not wait for us to accept it.

Leeanne Chames, a carer contributing to the Alzheimer’s Disease International (ADI) ‘I can, I will’ website.
This section on support after diagnosis is written on the basis that people receive a diagnosis of dementia at an early stage.

What does good support look like?

Helping people to come to terms with a diagnosis, to make decisions and plan ahead is critical in supporting them to live well with dementia. As more people receive an earlier diagnosis, new challenges for the type of help required emerge for everyone involved – from the person with dementia to their family and all involved in providing care. Although there is no single model of support, it begins with helping people to accept a diagnosis and understand their circumstances, fears, beliefs and hopes.

Many positive things can be done to help people with dementia, their families and carers at this early stage. Providing the right help at the right time, tailored to support individual needs, can make an enormous difference. Good information, advice, guidance and practical help may come from GPs and other health and social care professionals and dementia and older people’s organisations. Help can include access to peer groups, online forums and 24-hour helplines established in many parts of the UK.

Leading dementia charities, including the Alzheimer’s Society and Alzheimer Scotland, are at the forefront of campaigning to ensure people receive support immediately after diagnosis, while they have the capacity to make decisions, become active participants in their own health care and plan ahead. Ongoing, long-term support too is vital: helping people with dementia to enhance their coping skills, maintain control of their lives and improve their chances of being cared for in their own home for longer.

Facing the diagnosis

People will need time to come to terms with a life-changing diagnosis and should be encouraged to talk and ask questions about what it means. Leeanne Chames, a carer and administrator at Memory People, a dementia support group on Facebook, sums up the importance of accepting a diagnosis in the following way:

I think it’s the stories told by those who live with this disease – and by those who are walking it with them – that most effectively bring support and awareness. I believe it all begins with us, when each one of us, either as a patient or a caregiver is confronted with the reality of this disease. In that pain and sadness, we are faced with the acceptance or denial of it. If we don’t accept it, we allow denial a foothold, and there is simply no time for denial with this disease. Alzheimer’s does not wait for us to accept it.

(From ‘Acceptance versus denial of a diagnosis’, available to view on the Alzheimer's Disease International website)

A diagnosis can sometimes change relationships with friends, as one carer explains on the healthtalk website: ‘My relationships with friends... have changed. Some have become much closer, but others... I’ve lost touch with completely over five or six years.’

Another carer, again on healthtalk, says he deliberately made contact with one or two friends he hadn’t seen for some time: ‘They were all immensely relieved, very pleased indeed that I’d made contact. All of them that I spoke to said, “We wanted to make contact with you, but we didn’t quite know how to do it or whether you would welcome it”.’

Understanding the diagnosis

Acceptance of a diagnosis frequently coincides with a desire to learn as much as possible about the diagnosis, the particular type of dementia diagnosed, and potential treatment options. People with dementia and those close to them may approach a number of different professionals – GPs and other health and social care professionals, and care and carer support organisations – to ask about support after diagnosis and medication that may help.

Health and social care experts recognise that support varies from place to place, and person to person. Some people are being offered too much, or too little information, after being diagnosed or may struggle to get the right guidance at the right time. In the Social Care TV film ‘Living with young onset dementia’, dementia consultant Maria Parsons says: ‘The problem is people are getting a lot of help at the beginning and then are left to fend for themselves without really being plugged into local services.’

It is important to remember that people who have poor literacy skills or who come from a different background may need additional help (that is, information presented in video format or in a particular language) to understand their diagnosis and the implications.

Who can help?

Health and social care professionals and leading dementia and older people’s organisations lead the way in providing guidance, support and care for people with dementia and their family and carers.

Here’s a quick guide to who they are:

Expert welfare, legal and financial advice can be provided by organisations such as AgeUK and the Citizen’s Advice (see the section Dementia and decision-making).

Specialist groups can play an important role in providing support for people from black and minority ehtnic (BME) communities. Research carried out last year by SCIE shows that BME groups are under-represented in dementia services, partly because of awareness levels and the existence of stigma (Moriarty et al 2011). In London, a Department of Health-funded minority ethnic advocacy project has helped to highlight the need for specialist help.

Peer support groups

A growing number of peer support groups – that is, groups for people who have dementia and who wish to support and learn from each other – are operating successfully across the UK. They play an important role in helping people with dementia and their families and carers to come to terms with their diagnosis and to get the best help and advice.

Peer support can be facilitated by an organisation such as the Alzheimer’s Society, Alzheimer Scotland and Age UK through their network of dementia cafes and local carer support groups, or through community mental health teams. Support groups excel in helping people to be less socially isolated and to maintain independence and life skills.

Peer support can also be provided by campaigning groups, for example the Scottish Dementia Working Group (SDWG), a national campaigning organisation run by people with dementia within Alzheimer Scotland. The group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.

People with young onset dementia, struggling to come to terms with the challenges of being diagnosed at a young age and the challenges of staying in work and maintaining a home and family, particularly benefit from peer support groups.

Dementia forums

A growing number of people, particularly family carers, are asking for advice, sharing information and joining dementia discussions online. The Alzheimer Society’s Talking Point is one of the most popular internet forums. More than 150,000 messages have been posted since its launch in 2003. The forum is a place where anyone can ask questions and raise concerns over everything from legal and financial matters to diagnosis, memory and care issues.

Here are just some of the comments people have made about the value of online forums:

At last we find a place where others truly understand what living with/coping with dementia means when the rest of the world seems uncomprehending, uncaring or dismissive.

Talking Point member

This invaluable service helps people deal with the whole process of dementia: from diagnosis through to dealing with the illness and the sadness of loss. For carers especially, it is often the realisation that they are not alone that gives them the energy to continue in their caring role.

Talking Point member

I am virtually housebound with my caring role, but with my friends at Talking Point I am never alone.

Talking Point member

(Source: these quotes appeared on The Big Give’s website in 2012)

Innovative help

A wide range of innovative projects and schemes have been introduced to help people come to terms with their diagnosis. Dementia cafes have been set up in many areas of the UK to enable people with dementia and their carers to socialise and share experiences with others who are facing the same challenges.

A number of initiatives have been put in place to guide people to relevant and reliable sources of information to allow them to feel more in control of their lives and better able to manage their condition. They include the provision of dementia advisers, who act as a key contact for people with dementia and their families/carers. Dementia advisers work closely with other health and care professionals and help with access to peer support and counselling.

One of the most successful innovations has been the Facing Together Dementia Project, funded by the Scottish Government. One of the areas operating the project is East Renfrewshire and Renfrewshire. It runs a monthly dementia cafe and provide information and support tailored to people’s needs, including practical advice and guidance on legal and welfare matters and play a key role in helping people to live well with dementia and remain in control of their lives.

In a video about the success of the project, one young carer says the dementia cafe helped to transform the life of his father. ‘When he was first diagnosed his thoughts were... “I’m 58 years old and I’ve got nothing to live for”. Now, six months later, he realises it’s the start of a new stage in his life... that it’s not over.’ Others talk about how the cafe is ‘full of positivity’ and has given them ‘great hope for the future’.

Care worker’s role

A care worker can play an important part in helping a person to accept and understand the diagnosis, manage the symptoms and live well with dementia. In working closely with the person with dementia, carers and family members, during their visits they can encourage:

A person with dementia may rely on a care worker to provide regular advice and support, particularly if they live alone without everyday support from family and friends. A care worker can help by being aware of community and other relevant support. In all circumstances, it is important that a care worker adopts a positive approach, is patient, a good listener and offers reassurance.

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