I still cherish every moment I have with Jan – Bob’s story
Bob, who has been married to Jan for 62 years, reflects on their beautiful relationship in spite of a heartbreaking journey with dementia.
When someone is diagnosed with dementia, or seeking a diagnosis, they are likely to have a number of appointments with their GP, memory clinic and other healthcare professionals.
Our guide will help you get the most from these consultations.
It is a good idea to prepare for your appointment to ensure you get the most out of your time with the healthcare professional.
- If there is a particular GP you would like to see you can request this, although it may mean waiting longer for an appointment
- Write down the most important things you want to discuss. If there are more than two or three things, you may wish to book a double appointment
- Keep a record of any changes in symptoms or behaviour, including:
- Make a list of any medications being taken, including prescribed medications, over-the-counter medications, vitamin supplements and natural remedies
- Ask someone to accompany you – this may make you feel more comfortable, and they can share their own thoughts about the situation
- If you need a chaperone or interpreter, inform the surgery in advance
- What type of dementia has been diagnosed?
- What symptoms/changes in behaviour might occur?
- What treatments, if any, are available?
- Are there any local support groups:
- for the person with dementia – generally, and/or specific to their type of dementia?
- for their family/carers, including children with a parent who has young onset dementia (where symptoms develop before the age of 65)?
- Who will the person have appointments with going forward?
- Where will you see them, and how often?
- Who will book these (ie will the clinic send a letter with appointment details or do you need to phone and book appointments yourself)?
- Are there any local services that offer support with practical, social, financial and legal matters? Our Helpline and clinics can also offer support with this
- Make notes of important information, or ask someone to do this for you. You can record the conversation on your phone, but do tell the healthcare professional that you are doing this
- Do not be afraid to ask the healthcare professional to explain anything you do not understand, or repeat anything you do not hear clearly
- If the professional recommends any websites, support groups or other services, ask them to write down the details
- Ask if you can receive a copy of any letters that will be sent to other health or social care professionals – this is your right
- Before you leave, check that you have asked all the questions on your list and make sure you understand what will happen next, eg when the next appointment will be
- Write down what you discussed and what happens next
- Make a note of anything you still don’t understand so you can look it up or ask at the next appointment
- Book any further appointments or tests and write them in your diary
There is often a great deal of information to take in at healthcare appointments, and lots of different names, dates and places to remember.
Our practical guide to getting the most out of GP and other health appointments has space for you to record these important details. You can download a copy to fill in.
If you are living with dementia, you may wish to give your GP or specialist permission to share information about your care with other people.
If you would like a family member or close friend to be kept informed, ensure the professional has their contact details. They can also register with the surgery as your ‘medical proxy’ or ‘trusted person’ which means they can speak to the GP on your behalf to discuss your treatment and support. There is more information in our guide to online GP services.
You can also consent to the GP or specialist sharing information with other health and social care professionals.
It is important to make a lasting power of attorney (LPA) for health and welfare, which enables a nominated person/people to make decisions about your care if you lose the mental capacity to make them yourself.
It is common for many health appointments to take place remotely, by phone or video call. You can use the tips in this guide during these appointments too, and refer to our information on getting the most out of remote consultations.
Face-to-face appointments will be offered if physical examinations or tests are needed.
If you are offered a remote appointment and would prefer to see a professional in person, you can request this although you may have to wait longer.
Our dementia specialist Admiral Nurses can advise you on getting the most from your health appointments or any other aspect of dementia. Please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email helpline@dementiauk.org.
If you prefer, you can pre-book a phone or video appointment with an Admiral Nurse.
Dementia UK resources
- Advance Care Planning
- After a diagnosis of dementia: next steps checklist
- Getting the best out of a remote consultation
- How to get a diagnosis of dementia
- Lasting power of attorney
- Mental capacity and decision making
- Online GP services
- Tests for dementia
- Young Dementia Network personal checklist for recording symptoms
- Young onset dementia: getting a diagnosis
- Young onset dementia: next steps after a diagnosis
Other resources
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
