Things to consider after a dementia diagnosis
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Receiving a dementia diagnosis can be very difficult and emotional for both the individual and family. You will 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 relative can begin to put their personal affairs in order so that they can be reassured that they can carry on living as they wish.
The best way to manage your relative’s finances may be to organise a Power of attorney. Your relative needs to set this up themselves, while they are still capable of making their own decisions.
It is a good idea if you or another family member can be with your relative when they get the diagnosis, to 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.
Ask questions
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 tot 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 your relative consider to put in place to safeguard their financial and personal affairs?
Do some research to get some support
Once the diagnosis is confirmed, you will probably want to find out more about it. Check out the NHS website or information from specialist charities such as Dementia UK, Parkinson’s UK, the Alzheimer’s Society or Carers UK (see Useful organisations and websites).
These organisations have a number of useful guides and fact sheets to help people affected by dementia and their families. Some also have telephone helplines and local support groups.
Telling people
Initially, you and your relative might only want to tell close family and friends. As and when your relative feels 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.
Working
'A good home for dementia patients allows them to do what they like, provided it's not going to cause any harm.' Jenny's story
If your relative 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 occupational health service, approaching them first could be the best option as they will be able to assess your relative’s fitness to work, recommend adaptations and liaise with your relative’s health professional.
However, if you’re in doubt about what’s available where your relative works, contact HR. 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.
Driving
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. For more details about driving with dementia, and how to organise an assessment, see this page of the Alzheimer’s Society website.
Benefits
You or your relative 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 council tax reduction.
To find out more about what financial help your relative might be entitled to, contact the local Citizens Advice Bureau or use an online benefits calculator, such as:
Housing
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 sheltered housing schemes specifically for people with dementia. These schemes provide care while allowing your relative to remain independent for as long as possible. To find out if this might be a suitable option for your relative, see Sheltered housing for more information.