10 things to think about when you've been diagnosed with dementia

If you’ve recently been diagnosed with dementia you probably have all kinds of thoughts going through your mind, from shock and sadness to practical concerns about money or work. Here’s some basic questions it’s worth thinking about

1. Have you got someone to talk to?

Whether it’s your partner, your children, your best friend or a counsellor, it’s really important that you have at least one person you can confide in and talk honestly to about the diagnosis, your fears and your feelings.

Tip: If you don’t want to worry your family, you might want to talk to someone in a support group, or a therapist who has been trained to listen and help you make sense of what’s happening. You will probably be entitled to a number of free counselling sessions on the NHS. The first person you should speak to about this is your GP.

2. Have you told the people who need to know?

It’s important for you to tell certain organisations such as the DVLA about your diagnosis. Don’t panic, this doesn’t mean you’ll have to give up driving, but you could be fined up to £1000 if you don’t tell them and you’re then involved in an accident. If you’re working, you might want to tell your employer, but you aren’t always obliged to. Have a look at your contract and if you’re still unsure talk to someone in your care team.

3. What are you entitled to?

Being diagnosed with Alzheimer’s or another form of dementia could mean that you – or the people you live with – are now able to access some much needed help. For example, you might be entitled to free equipment which makes life at home easier, or you might be able to get help with cleaning and cooking. If you’re only mildly affected by dementia, it may be that you won’t be able to get any help yet (because you’re still able to look after yourself) but it’s still worth finding out what might be available further down the line.

Tip: Start the ball rolling by contacting your local Social Services department and asking them for a community care assessment.

4. Have you made a will?

Every adult should have a will, whether they’ve been diagnosed with dementia or not. So if you don’t have one, or would like to make some changes to your existing will, it’s wise to get this done now, whilst you’re still fit and well, rather than leaving it until the illness has progressed and affected your mental capacity, or until your family start nagging you. Your will can be as simple, or as complex as you want it to be – and it doesn’t have to cost a lot. Most people say they feel much better once it’s done.

5. Are your affairs in order?

Nobody can predict the future, and whilst it’s very likely that you’ll still be living well for quite some time yet, it’s also sensible to be organised with your financial and legal affairs. If nothing else, it will save your loved ones a lot of stress if all your important papers – including your will, pension details and bank statements, are easily accessible.

Tip: Enlist the help of one person you’re close to and spend a couple of hours explaining where you keep important documents and how you’d like them to manage your affairs if, for example, you take ill or have to go into hospital.

6. Have you appointed an attorney?

There may come a time on the dementia journey when you need help making decisions. This is probably a long way off, but it is worth having a plan. Many people with dementia decide quite early on to appoint an attorney to look after their financial and legal affairs if it ever becomes necessary. You can also appoint another attorney to be responsible for your health or medical treatment. It’s up to you who you appoint, providing they’re over 18 and you feel you can trust them completely.

7. Do you want to make an advanced decision or a living will?

This is a way to ensure you stay in control of your life and medical treatments. An advanced decision (sometimes called a living will) enables you to refuse procedures or treatments further down the line, such as CPR (cardio pulmonary resuscitation) which might prolong your life but won’t, in your opinion, add any quality to it. If you have very strong feelings about this, or other treatments you might not want to have, it’s worth making an advanced decision.

8. Would you like to make an advanced statement?

This is another way to stay in control of your health. An advanced statement is a way to express (in written form) your wishes and beliefs about the way you’re cared for in the future. This includes spiritual and emotional support, not just medical treatment. For example, if you would like your religious beliefs to be respected, or if you’d rather stay at home or would consider going into a care home.

9. Have you checked you’re getting the right benefits?

The benefits system can be a bit of a maze if you’re not used to navigating it. But there are a few simple checks you – or a loved one – can do now. For example, if you have dementia you might be entitled to a Personal Independence Payment. If you’re caring for someone with dementia you could be eligible for a Carer’s Allowance.

10. Are you looking after your health?

All the evidence suggests that the better care you take of your physical and mental health, the stronger you’ll remain. Living a heathy lifestyle – which includes cutting back on alcohol, eating a balanced diet, cutting out smoking and taking regular exercise – has been shown to slow down the progress of dementia and make you feel better for longer.

Good to know

Whilst a dementia diagnosis can be a great shock, it can also act as a wake-up call, a way to concentrate the mind, put life in perspective and work out what really matters to you. If you haven’t already made a bucket list now is the time to do it. Many people find that learning to live in the moment, and making a conscious effort to do things they enjoy, makes them feel healthier and happier than they have for a long time.