After a diagnosis of dementia


Expert reviewer Versha Sood, Dementia Lead, Richmond Care Villages
Next review due June 2023

A dementia diagnosis can be overwhelming, for both the person who is diagnosed and those who are close to them.

There’s a lot of information to take in and decisions to make about treatments and support. Although not easy, it’s best to start talking about these things when the person with dementia is still able to take part in decision-making.

Coping with emotions

It’s common for you and your family to feel very emotional about the diagnosis.

The person with dementia

Those with dementia may already be aware that they have memory problems but having the diagnosis confirmed can be distressing. They may find their symptoms frustrating, and be upset at the thought of the condition progressing. The thought of losing their independence may be frightening. For some people, a dementia diagnosis may bring feelings of relief, because they can now make sense of the symptoms they’ve been having. Even so, the diagnosis may change life abruptly because of a sudden change in how they are perceived socially.

Partners and family members

Family and friends also often have a strong emotional reaction. Even if they suspected the dementia diagnosis, having it confirmed can still be distressing. Professionals who support carers often liken the emotional reaction to grieving. Although their loved one is still living, they may feel that they are beginning to lose the person they know. They may feel sad or angry, or both.

People caring for someone with dementia may have felt frustrated with them at times, and then felt guilty because of this. It may be that having the diagnosis allows them to fully understand and accept the behaviour and symptoms they previously found difficult to cope with. A dementia diagnosis may bring feelings of relief and closure for family members. Carers tend to feel better emotionally as time goes on, even when dementia has worsened.

Coming to terms with the diagnosis

All these reactions are perfectly normal. You all need time to come to terms with the news you’ve been given and to process what dealing with dementia will mean for your lives. The important thing is to recognise when you and those close to you need support. It’s also a time when people with dementia and their carers need to work through a ‘new normal’ together. For example, sometimes carers’ concerns after the dementia diagnosis may lead to them doing more than is needed for the person with dementia. But that may lead to people with dementia feeling a lack of control, and that life has abruptly changed. It’s important to find out what works best for you and your loved ones, in your particular situation.

After a diagnosis, people with dementia and their relatives may find help through others in a similar situation, such as a dementia support group. Charities such as Alzheimer’s Society have helplines or online forums where you can share experiences. Meeting and talking to other people who are going through the similar experiences can be reassuring.

Sometime people need more structured dementia support. Counselling can give you the space to express any frustration or anger that you may be feeling. You can explore how you really feel and begin to move forward. Ask your GP or speak to your local Admiral Nurse team.

Planning dementia treatment

When someone receives a dementia diagnosis, a specialist usually prescribes treatment. This may be at a hospital clinic or a memory clinic. Once it’s established, the doctor will monitor the treatment and how well the person responds to it.

There is currently no cure for dementia, but there are care and treatments that can help. Medicines for Alzheimer’s disease and dementia with Lewy bodies are usually started as soon as the dementia is diagnosed. If they seem to be helping, the dose can be gradually increased.

Other treatment will depend on the symptoms. For example, medicines for depression or anxiety can be helpful in all types of dementia.

As well as medicines, the specialist or memory clinic may suggest some group therapy. Groups that provide mental stimulation or opportunities for remembering and talking about the past can be helpful when dealing with dementia. This is also known as ‘psychosocial interventions’ and can include things like bingo, arts and music therapy, and gardening. A well-planned day can help the individual build a routine.

It’s important that the person with dementia and those closest to them are involved in treatment and care decisions. As well as immediate treatment, the person with dementia may be asked how they want to be cared for in future. Doctors and others working with people with dementia know that it’s important to have these conversations from the start, when the person with dementia is still able to take part in the discussions.

We have more information about different types of dementia and how they are treated.

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Legal and financial planning

There is a lot to plan when someone is diagnosed with dementia. Getting a few things in place early on makes life easier later. Here is a list of things to think about.

Power of Attorney

There may come a time when the person with dementia it not able make certain decisions – for example, about treatment or finances. If this happens, it can help if they’ve already given a loved one permanent Power of Attorney. This is the legal power to make decisions on behalf of someone who is not able to make them for themselves.

Different types of permanent Power of Attorney can enable someone to make:

  • health and general welfare decisions
  • decisions about property and finance

Permanent Power of Attorney has different names across the UK.

  • In England and Wales, it’s called Lasting Power of Attorney. It can cover health and welfare decisions, financial decisions, or both.
  • In Scotland, it is Welfare Power of Attorney for health decisions, Continuing Power of Attorney for money and property, or Combined Power of Attorney for both.
  • In Northern Ireland, it’s called Enduring Power of Attorney and only covers decisions about money and property.

Getting permanent Power of Attorney is a legal process that must be done through a solicitor. There is a charge for this. The person with dementia must be able to make the decision to appoint someone to handle their affairs, so it is best to do this early on. The person named as having Power of Attorney doesn’t have to use it until they need to.

If you have a loved one who can’t make decisions and you don’t have permanent Power of Attorney in place, you can apply to be given this power. The process for doing this is different across the UK.

  • In England or Wales, you can apply to the Court of Protection to become a Deputy.
  • In Scotland, you can apply to the Office of the Public Guardian for a Guardianship Order.
  • In Northern Ireland, you can apply to the Office of Care and Protection to become a Controller.

Applying in this way is more complicated, so it’s best to avoid it by arranging permanent Power of Attorney in the first place.

There is information about arranging permanent Power of Attorney and applying to make decisions for someone on:


Wills

A will is the best way for someone to make sure that their wishes about their possessions and finances will be followed after they die. If you have a loved one with dementia, it’s best to check if they have made a will. If they haven’t and are no longer able to, their assets will be divided between their closest relatives when they die. There is information about making a will on the Gov.uk website.

Benefits

Depending on their age, a person with dementia may be entitled to Attendance Allowance or Personal Independence Payment (PIP). These depend on your level of need, not your income or savings (they are ‘non-means tested’).

Carers may also be entitled to benefits, such as Carers Allowance, but this does depend on your income. Ask a social worker or the Citizens Advice Bureau. Alzheimer’s Society has some very useful information on benefits that you may find helpful.

Employment

Some people are still working when they are diagnosed with dementia. Whether or not they can continue to work depends on what they do and how the dementia is affecting them. It’s a good idea for them to speak to their employer. With their employer’s support, they may be able to continue working for longer with little adaptive changes if needed to support people’s memory, etc if needed. People with dementia and their carers are covered by equality laws, meaning employers can’t discriminate against them. The laws that say this are the Equality Act (in England, Scotland and Wales) and the Disability Discrimination Act (in Northern Ireland).

Making decisions in advance

There are things that can be done to make sure that someone with dementia has their wishes taken into account when they are no longer able to make decisions for themselves. An ‘advance decision’ (sometimes called a ‘living will’) details their views about medical care. An ‘Advance statement’ enables people to say how they would like to be cared for.

Alzheimer’s Society has good information about advance statements and advance decisions.

Having these conversations early enables carers and family to know how the person with dementia feels about future medical treatment and care. This can be one way of starting potentially difficult conversations with the whole family, as well as with doctors and nurses.

Driving

Dementia may not affect a person's ability to drive safely immediately after they’ve been diagnosed, or even for a few years. But it can be difficult to tell when this might change. It is not that the person forgets how to drive, but that they have difficulty with judgement and concentration, resulting in a greater risk of accidents.

In England, Scotland and Wales, people need to tell the Driver and Vehicle Licensing Agency (DVLA) that they have been diagnosed with dementia. This is done by filling in a form that can be downloaded from the GOV.UK website. The form asks for details about the person’s health and for contact details of medical professionals they are seeing. Once you have sent the form in, as long as your doctor agrees, you can still legally drive while the decision is made. 

As part of making their decision, the DVLA may ask the person to take a driving assessment. If the person is in the early stages of dementia, the DVLA may decide that they can continue driving, but that this will be reviewed every year. In other cases, the DVLA may decide that the person must stop driving. If you are you told you can’t continue to drive, you can appeal. But you mustn’t drive until the appeal is heard.

In Northern Ireland, people should contact the Driver and Vehicle Agency (DVA) after a diagnosis of dementia. More information is available on the NI Direct website.

Worries about not driving

Not driving may make it harder for the person with dementia to go out and be independent. Local community transport schemes may help – this can include dial-a-ride buses that pick people up from their homes, and volunteer driver schemes. The Community Transport Association has more information about what's available in different areas on their website.

If you’re worried about how both of you will cope practically when the person with dementia can’t drive, speak to your GP or your local council. As a carer, you’re entitled to a carer’s assessment – this is a chance to discuss your needs. It may lead to help from social services, which can include help with transport and travel costs, as well as other dementia support.

 



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  • Reviewed by Liz Woolf, Freelancer Health Writer, and Graham Pembrey, Bupa Head of Health Content, June 2020
    Expert reviewer Versha Sood, Dementia Lead, Richmond Care Villages
    Next review due June 2023

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