When you first find out you have dementia, you might feel quite shocked and find it hard to get your head around everything.
It can be tricky trying to think of all the areas of your life that might be impacted by your dementia, especially if you don’t feel your life has changed very much or you don’t want to think about your illness. It will help to chat things through with loved ones.
Here are some talking points:
Legal matters – who will be in charge of making decisions for me when I’m no longer able to do so for myself? Who will be in control of my affairs? How can I record my future wishes?
Money – how can I get help with this? Have I made a will and decided where my money will go - if so, who has copies of this and where can it be found? Are my finances in order? How will I pay for care if I need to move to supported living or residential care? Can I claim any benefits?
Health – who will go with me to medical appointments? What medication am I taking and who knows about it? Who will be my doctor’s main point of contact? What are my health needs – and who needs to know about them?
Living – how can I organise my home so that it makes life easier for me? What are my likes and dislikes – what do I like to eat, do, and wear? Can I still drive? Where would I ideally like to live?
Care – who will look after me or help me look after myself? Is that person eligible for any benefits? Do I have a care plan – how do I get one? Do I need further assessment?
Sometimes, we don’t see changes in ourselves, or others notice things that we might not, so it’s a good idea to have someone with you when you go to medical appointments so those things can be shared. It’s also a good idea to have someone with you for appointments so that you don’t forget anything and have someone to discuss issues with afterwards.
Here are some questions you might ask your doctor:
Will there be any follow-ups after my initial diagnosis? If so:
-- who will I see
-- when/where will I see them?
-- how often might follow-ups be?
-- how do I make appointments?
Who co-ordinates my care?
How can I find further support?
What medication might help me?
-- How do I take my medication?
-- Are there any side effects I should be aware of?
-- How do I get a repeat prescription?
-- How long will I be on this medication before it’s reviewed?
What can I expect in the immediate future in terms of symptoms?
Is there anything I can do to help myself?
As well as ensuring you have someone to go with you to see your doctor, there are some other practical things you can do before your visit so that you get the most out of the appointment.
Some things you might consider include:
Jot down the most important things you want to discuss, including any concerns or worries.
Keep a note of any changes you’ve noticed such as hearing, sight or balance problems. Include any new symptoms and what they are – and dates and times of when they occurred.
Make a list of medications you’re taking and include prescribed and non-prescribed (vitamins, supplements, over-the-counter medications, natural remedies).
If you’ve got a lot to discuss, mention this when booking – you might need a double appointment.