Dealing with the dementia diagnosis
Receiving a dementia diagnosis can be very difficult and emotional for both the individual and family. You’ll all need time to process the news. The diagnosis does however mean that you can start to make plans about what help, information and support may be needed. Your loved one can begin to put their personal affairs in order so that they can be reassured that they can carry on living as they wish.
Your loved one's GP might ask you to go along to an appointment with them if they are sharing a diagnosis, and it's a really good idea to be there if you can. They'll appreciate your support and you can make sure that you get all the information that you need.
There are a number of practicalities you and your family should consider at this point, outlined below.
Questions you might like to ask
When you meet with the GP or specialist to discuss the diagnosis, try to get as much information as possible. Asking the questions below can help you get an idea of what to expect as the condition progresses, but bear in mind that everyone with dementia is different and their condition will be, too.
- What form of dementia is it?
- What is likely to happen in the future?
- What symptoms can be expected?
- How quickly is the condition likely to progress?
- Is there anything that can be done to reduce the risks or minimise symptoms?
- What help and support (such as dementia support nurses) is available locally?
- Are there any medicines that can help?
- What legal things, for example Power of Attorney and a will, should the person you’re supporting consider putting in place to safeguard their financial and personal affairs?
Do some research to get support
Once the diagnosis is confirmed, you will want to find out more about what it means. Check out information from specialist charities. The following organisations have a number of useful guides and factsheets to help people affected by dementia and their families together with forums, telephone helplines and local support groups.
A charity aimed at improving the lives of people living with dementia.
A national membership charity that champions carers’ rights, connecting and supporting carers online and in local communities.
Advice line for benefit checks and advice on financial matters:
Normally open Mon and Tue, 10am–4pm
For anyone with a question or concern about dementia, call the helpline:
Mon–Fri, 9am–9pm; Sat–Sun, 9am–5pm
Telling those around you
Initially, you and your loved one might only want to tell close family and friends. As and when they feel confident about disclosing their diagnosis and when they themselves have come to terms with it, you should also consider telling others who the condition may have an impact on, such as neighbours or local groups they belong to.
Power of Attorney
The best way to manage the finances of the person with dementia may be to organise a Power of Attorney in England and Wales, Scotland or Northern Ireland. Your loved one should look into setting this up as soon as possible following a dementia diagnosis.
Continuing to work
If the person you’re supporting is continuing to work, they might need to think about how their diagnosis might affect their ability to do certain tasks, now and in the future. If they feel that their condition could have an impact on their job or their work – particularly if the safety of themselves or others could be compromised – they should tell their employer as soon as possible so a risk assessment can be done.
If you know that the company has an occupational health service, approaching them first could be the best option as they will be able to assess your loved one’s fitness to work, recommend adaptations and liaise with their health professional.
However, if you’re in doubt about what’s available where your loved one works, contact their HR department. They should be able to tell you if there is an occupational health service and put you in touch with them, or advise on how you should proceed if there isn’t an in-house occupational health service.
If you are caring for someone with dementia and are beginning to find it difficult to work full time, find out about your rights at work.
Continuing to drive
Many people are able to continue driving for some time after a diagnosis of dementia, as long as they are safe to do so, but they must inform the DVLA (or DVLNI in Northern Ireland) of their diagnosis.
If there is a concern about the person’s ability to drive, they must take a driving assessment. This is not a standard driving test, but a specially-adapted assessment for people with dementia. The Alzheimer’s Society has some useful information about driving with dementia, and how to organise an assessment.
Benefits that could be claimed
You or your loved one might be entitled to Attendance Allowance or the Personal Independence Payments (PIP) if their condition affects their ability to care for themselves, and if you’re going to be looking after them, you may be entitled to Carer’s Allowance. They might also be eligible for benefits such as Housing Benefit or a council tax reduction.
To find out more about what financial help your family member might be entitled to, contact the local Citizens Advice Bureau or use an online benefits calculator, such as those on the gov.uk or Turn2us websites.
Staying at home is what most people want. There are lots of potential ways to make this happen through a range of support and services, which can be discussed either at the time of diagnosis or throughout the progression of living with dementia. Information can be found from the local authority, your GP and the Alzheimer’s Society.
There are some extra care housing schemes specifically for people with dementia. These schemes provide care while allowing people to remain independent for as long as possible.
A good home for dementia patients allows them to do what they like, provided it’s not going to cause any harm.
Care needs and how they might change
If your loved one is diagnosed with a progressive memory problem, it’s likely that they will need an increased level of care and support in the future. If they are keen to receive this care within their own home, read through our guide on organising home care to find out how this could work.
They may also receive care in a day care centre or, in the advanced stages of dementia, they may need to move into a care home or have a comprehensive package of support at home. Our article about the advanced stages of dementia gives you more information.
If the person you’re supporting is experiencing difficulties, contact their local authority to arrange a needs assessment. This is a free professional assessment of their care needs.
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