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.
How to get a diagnosis of dementia is one of the most common questions our Admiral Nurses are asked, so we have broken this question down into the key points we think you may need to know.
We are aware that in some areas, there are waiting lists for a memory assessment or diagnosis. This may be due to delays in accessing GPs, Memory Clinic services, or other healthcare professionals who specialise in diagnosing dementia.
However, there are steps you can take whilst you are waiting for an assessment:
- You can keep a symptom diary, or a note of any changes in your relative; that way key issues can be listed to inform the assessor when the time comes for assessment
- Starting a life story can be a good way to record your relative’s needs and wishes to allow for better communication between health and social care staff. It needs to reflect your relative’s interests, personality, likes and dislikes
- Many activities, which you know your relative enjoys, can help to reduce the symptoms of dementia. This can include music, exercise and anything else which stimulates long-term memories such as aromatherapy
- You may also wish to raise this issue with your local MP so that attention increases at government level
- Please make sure that you are looking after your own physical and emotional well-being
If you need any practical suggestions of how to cope while waiting for a dementia diagnosis, speak to one of our dementia specialist Admiral Nurses.
Once you’ve received a diagnosis of dementia, read our next steps checklist which has been written by our Admiral Nurses.
If you’re concerned that you, or someone you know, is showing signs of dementia, it’s important to see a GP.
There are many different conditions that can mimic the early signs of dementia including: infections, delirium, vitamin deficiency, depression, anxiety and diabetes. These conditions are treatable, so it is important to visit a GP for tests to identify and manage these conditions. Once these conditions have been ruled out and there are still concerns about the ongoing changes then the GP may refer to the specialist memory assessment team for further tests.
An early diagnosis of dementia can help the person and their family to understand what form of dementia they have, why the changes they are experiencing are happening, and what they can do to manage them. It also enables the person and their family to have conversations about how to live as well as possible with the diagnosis and to plan for the future.
The symptoms of dementia include changes in:
- short-term memory
- thought processes
- concentration
- communication, comprehension and word finding
- motivation
- ability to perform everyday tasks
- personality, mood, behaviour or social functioning
However, all of these symptoms can be caused by other conditions – such as depression, an underactive thyroid, a vitamin B12 deficiency, or medication side effects – so it’s important to see a GP in case there’s a cause that may be treatable.
Receiving a diagnosis of dementia can be distressing for the person and their family, and there may be many questions and concerns that need to be discussed with a specialist dementia nurse (Admiral Nurse).
Our dementia specialist Admiral Nurses can help you throughout the process. You can call the free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email helpline@dementiauk.org.
You can also book a phone or video appointment in Admiral Nurse clinics at a time that suits you.
In an initial appointment, the GP should ask the person about:
- the problems they are having
- when they started, and whether it was sudden or gradual
- how they affect their daily life
It’s helpful if a partner, relative or friend goes to the appointment too, as they may have noticed changes that the person themself hasn’t.
They should also briefly test the person’s memory and cognitive abilities. This might include asking them to:
- state the day, date and year
- name some common objects, for example from pictures, or as answers to questions
- remember and repeat items to test concentration and short-term memory
- complete a drawing
In addition, the doctor should do a physical examination and arrange blood and urine tests to rule out other possible causes of the person’s symptoms.
After the initial appointment, the GP may refer the person to a specialist. This could be:
- a psychiatrist with experience in dementia
- a doctor specialising in elderly care (geriatrician)
- a doctor specialising in the brain and nervous system (neurologist)
The person may be seen in a memory clinic, a hospital or a community setting like a GP practice.
Bear in mind that although dementia may be diagnosed by a doctor who specialises in old age, it can also affect younger people. In people aged 65 or under, it’s referred to as young onset dementia.
At the appointment, the specialist should take a detailed medical and family history. In addition, they will ask questions about the person’s abilities with everyday tasks such as shopping, cooking, driving, and self-care, such as washing and dressing.
The specialist should then assess the person’s cognitive abilities using tests of attention, memory, verbal fluency and language, and their visual and spatial abilities. This might include exercises such as:
- counting backwards from 20
- memorising an address and recalling it a few minutes later
- copying a diagram
- drawing a clock face
They may also request a brain scan to look for any abnormalities such as a tumour or evidence of a stroke, if that has not already been done by the GP.
As with the initial GP appointment, it’s a good idea for a family member or someone else who knows the person well to go with them and share any useful information. If they can’t, they may want to write a short letter outlining the issues.
It’s natural for people to be reluctant to see a GP or to be afraid of getting a dementia diagnosis. They might be worried that they’ll lose their independence, have to give up driving, or have to go into care. In some cases, they may not understand why you’re concerned about them, or deny that there are any problems.
Try to explain to the person that their symptoms may be due to another condition that could be treated, as this may make them more willing to see their GP. You could also explain that if they do have dementia, a prompt diagnosis often means they can get the right support sooner.
Sometimes, there may be a delay in being able to arrange a face-to-face appointment with a GP, especially as many practices have kept phone or video appointments.
In both of these circumstances, it may be helpful to notify the GP in writing (either by letter or email) of any concerns you have or symptoms you have noticed, including details such as specific examples and frequency. The GP can then decide if any action needs to be taken or a face-to-face appointment needs to be prioritised.
If the GP won’t refer the person to a specialist, you can ask them to reconsider or for a second opinion – but the GP doesn’t have to agree to this.
If you are experiencing difficulty getting a diagnosis, or have questions or concerns about any aspect of dementia or suspected dementia, our specialist Admiral Nurses can help. Call the free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email helpline@dementiauk.org.
You can also book a phone or video appointment with our virtual Admiral Nurse clinics to discuss the process of getting a diagnosis or any other issues related to dementia or suspected dementia.
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.
