What should you do when you’ve been diagnosed with dementia?

Even if you have suspected for a while that you may have dementia, it may still be a shock to have the diagnosis confirmed. Allow yourself some time to come to terms with the diagnosis, but don’t delay for too long before starting to plan for the future. Here are some important tasks to carry out as soon as possible:

  • Tell family and friends – It won’t be an easy conversation but they may have already been concerned about you and will want to know. They will also be keen to provide support – emotionally as well as physically. Being able to talk to someone about the diagnosis and know that you’re not alone may make you feel empowered, as you’re taking positive steps to discuss and plan your future. Let one or two trusted neighbours know too so that they can help out in the future (for instance, you may want them to keep spare house keys to your property).
  • Set up direct debits or standing orders for regular bills or payments – This will mean they are paid from your bank account every month without you having to worry about posting cheques or making online payments.
  • File your paperwork clearly – Make sure your bank statements, bills and insurance documents are filed in a clearly labelled folder where they can be easily found. Let family or a close friend know where they are and keep a simple system where you file the most recent bank statement, bill or document at the top of the file so that recent documents can be found quickly.
  • Consider giving someone you trust third party authority on your bank account – This means that you are letting the bank know that you would like someone else to have access to your bank account and the ability to manage it in case you are unable to do so in future. The person you choose to have the authority will be able to look at your bank balances, transfer funds, make online payments for you and order cheque books on your behalf, so it’s important to find someone you trust. You will need to go into your local branch with the person you choose and both of you will need to take identification, including passports and proof of address.
  • Arrange a Power of Attorney – This will enable family or friends to make decisions on your behalf when you are no longer able to do so and it’s important to set this up while you are still deemed to have mental capacity. It’s advisable to cover both financial and health matters, which means organising Power of Attorney for Property & Finance and Power of Attorney for Heath & Welfare. You can appoint just one person to be your attorney or you can appoint several people. There is no limit to the number of attorneys you can appoint. You may want to appoint more than one attorney in case one person becomes ill or is unable to act for you. A solicitor can arrange this for you. For more information on setting up a Power of Attorney, click here.
  • Make a will (or make sure the one you have is up to date) – Making a will means deciding what happens to your assets (money, property and possessions) after you die. You can still make a will with a diagnosis of dementia, so long as you can demonstrate that you understand what you are doing. You can write your own will but it’s a good idea to talk to a solicitor as it will still need to be witnessed and signed to be legally valid. When writing your will, think about who you want to benefit and who is going to sort out your estate (i.e who will be your executor). A solicitor will be able to advise you.
  • Consider making an advance decision – also known as an advance directive, this is a legally binding document you can make now to refuse a specific type of treatment in the future when your health declines. It covers what type of treatment you would consider having and what end- of-life-care you would like, including whether you would want to be resuscitated if you were to stop breathing. It can also cover whether you’d like to donate organs after you have died. It doesn’t need to be signed in front of witnesses but it needs to be set out clearly using very specific wording regarding future treatment. (An example would be specifying that you do not wish to be prescribed antibiotics if you were in the late stages of dementia and you became ill with pneumonia). You can write out an advance decision independently without involving a solicitor, but it’s worth letting your GP know that you’ve done so and letting them have a copy. It’s also important to let family and friends know that you have prepared this document and making sure they know where it is, or keeping it somewhere where it can be easily found. For more information on making an advance decision, click here.
  • Enlist support from your local authority – Although you might be able to manage on your own at present, your care needs will increase in future and you may need some help with routine household tasks, as well as looking after yourself in the future. Your local authority is obliged to carry out a care and support assessment to establish what help you need. To arrange for an assessment, contact your local social services or your GP. Services vary locally, but you may be entitled to help with household tasks and personal care.
  • Talk to someone – Your family and friends will hopefully be supportive, but sometimes it’s also helpful to talk to others who understand or have had experience of dementia. Alzheimer’s Society has a free helpline called the National Dementia Helpline. Call the helpline on 0300 222 1122 to obtain support, information and guidance or visit http://www.alzheimers.org.uk. Age UK also has a free advice line on 0800 169 2081 or visit http://www.ageuk.org.uk