What to Consider When You Have Been Diagnosed with Dementia

Written by Active Minds on Monday the 13th of July 2020.


Being diagnosed with dementia or discovering a loved one has been diagnosed with the condition can be incredibly difficult to come to terms with. It is important to allow yourself and your family plenty of time to come to terms with the diagnosis, talking it through and discussing any questions you or a loved one might have. However, once you feel capable and strong enough, there are a few things you can do that will not only help you come to terms with the diagnosis, but also help you and your family as the condition progresses.

Understanding Dementia

Spend time understanding what dementia is, and how it will affect you and your family’s life. There are plenty of resources available to you, as well as fully trained professionals who can talk you through your diagnosis step by step. You may want to start with your GP, bringing a list of questions you have to your appointment. Charities like Age UKAlzheimer’s Society and Dementia UK provide a range of services to not only help answer any questions you may have, but also to offer continued support and advice throughout your dementia journey.

Get Organised

Spend some time organising all your important papers, such as your will, bank details and mortgage documents, and putting them in easily accessible places. This means that should your family need to get hold of your documents; they are easy to find and make sense of.

You may also want to consider setting up direct debits or standing orders for all your bills, so they are automatically taken from your account without you having to deal with them yourself. This will help reduce any undue stress for you, as you will not have to worry about making payments on time.

Make A Will

If you haven’t already, now is the time to write your will. This ensures that your wishes are met after your death, and your money, property and belongings are given to the correct people. Contact a solicitor who will talk you through the entire process. Free Wills Month brings together a group of well-respected charities to offer members of the public aged 55 and over the opportunity to have their simple Wills written or updated free of charge by using participating solicitors in selected locations around England, Northern Ireland and Wales.

Power of Attorney

You may want to think about appointing a trusted family member or close friend as an ‘attorney’. They will be able to make choices on your behalf regarding managing your affairs, e.g. medical decisions and finances, should you no longer be able to. Take a look here for more information on setting up a Lasting Power of Attorney (LPA).


Being diagnosed with dementia may entitle you to a number of benefits. These benefits can include income support or minimum income guarantee, incapacity benefit, housing benefit and council tax relief.

Additionally, you may also be eligible to receive Personal Independence Payment(PIP). PIP is available for anyone age 16 – 64 who has a disability. To find out if you are eligible, take a look at the GOV.UK PIP Checker. Or, if you are 65 or over, you may be entitled to Attendance Allowance.

Similarly, if a loved one is caring for you, or vice versa, you/they may be entitled to Carer’s Allowance.

Telling Family and Friends

Getting told you’re living with dementia can be difficult to come to terms with but having a support system is highly beneficial moving forward. It is therefore important to be open and honest with the people closest to you so you can get the support you need to continue living well. Whilst there is no right or wrong way to react to the news you have dementia, there is also no set way to tell your loved ones the news.

Deciding how to tell people can a daunting part of the process, but there are a few things you can keep in mind to help it be a positive experience. You may only want to tell those closest to you, especially at first. If this is the case, begin with those you are most comfortable with and those who need to know.

Take the time to find somewhere quiet and relaxed to have the conversation with friends and family and explain the situation in a calm manner and try to be as informative as possible. Take your time and be prepared to answer their questions; you can ask your doctor for advice on what and how to tell people. Do remember that you don’t have to be an expert straight away, and this is also a learning journey for you.

Expect different reactions; it may be harder for some people to accept and that is ok. Allowing people to take the time to process and understand the situation can be beneficial in the beginning.  Others may be keen to help as much as they can, be sure to let them know you appreciate this and will ask for help as and when you need it.

There is no right or wrong way to tell people that you are living with dementia, the most important thing is that you’re comfortable doing so. By being as open and honest as possible as this gives people the best opportunity to help. Let them know how you’re feeling and the support you might need, if you want help you should ask for it and if you need some time, ask for that too.