What to do if I think I or my loved one has dementia

Firstly you don’t have to do this alone

What is dementia?

Dementia is a term for a number of different progressive conditions that affect how our brain works. They can affect people in different ways and at differing speeds. These conditions include Alzheimer’s disease, Lewy Body dementia, vascular dementia, frontotemporal dementia and many others. Making a diagnosis of dementia can sometimes take some time as many of the symptoms experienced at first may be similar to those of other conditions. The doctor will be looking for signs and symptoms, it’s a bit like putting a jigsaw together. A sign is something that can be seen, e.g. high blood pressure, condition of skin and a symptom is something that is felt, such as feeling giddy, lightheaded, feeling pain.

What does dementia look like?

Below are some common changes that may occur (but be mindful at this stage, this doesn’t mean a definite diagnosis of dementia):

Possible changes in mood – more apathetic, losing that “get up and go.” Irritability, restlessness, anxiety, a feeling of hopelessness and possible agitation, aggression and in some cases extreme happiness. The key word here is change – if a person is acting out of character or “not feeling themselves.”
Possible changes in communication– struggling to find a word, losing the thread of a sentence and a general slowing down of processing information; that means what we take in, in terms of people speaking to us and what speed at which we respond. There may be a tendency to repeat questions and in relaying stories too.
Losing track of time, difficulty with making decisions and planning tasks such as paying bills, organising household chores.
Losing objects and putting them in unexpected places.
Getting lost in familiar settings.
Changes in vision and seeing, in judging distances and sizes of things. Mistaking objects and getting muddled with patterns.
Poor hearing (not always associated with dementia).

What to do if I/we are are concerned?

Write down some of the problems/symptoms you have been noticing and where possible date them (this gives the doctor an idea of how long the problems have been going on for) and think about what you want to say to your doctor. Make an appointment with them and explain that you will need a longer appointment, where possible choose a quieter time at the surgery and explain why. Where possible take a trusted friend or family member with you and a list of any medications or herbal remedies taken.

What to expect at the doctor’s appointment

The doctor will need to ask a number of questions to put the pieces of the jigsaw puzzle together, this process involves ruling out other conditions that may show similar symptoms.

They will need to know medical history and what medication is being taken and may test balance, sensation, movement, hearing, speech and vision. They may ask some questions that examine memory and thinking skills – these are called cognitive assessments.

Blood and urine tests should also be arranged to rule out any other causes for the symptoms experienced and an ECG to check heart health may be arranged.

The doctor may not be able to give you any answers at the first appointment and will need you to either book another appointment once the test results return or a referral to a specialist may be required.

What can I/we do to help ourselves?

In the meantime, while waiting to hear back from the doctor, here are some things (that we know from research) that can reduce the symptoms, you can do these to help yourselves where able:

Go out for regular walks and gentle exercise (even chair exercises are good if unable to walk), being out in nature is especially good

Choose healthier foods – leafy greens, vegetables, lean meat and fish (Mediterranean diet) https://www.sciencefocus.com/the-human-body/dr-michael-mosley-mediterranean-diet-fart

Reduce alcohol intake and cut out smoking/vaping (you can talk to your doctor about how to do this)

Meet up with friends and local groups, being more sociable can help improve our brain health

Take up a hobby (e.g. singing, painting, gardening) https://menssheds.org.uk/

https://www.england.nhs.uk/personalisedcare/social-prescribing/

Find a local memory café where you can meet with other people in a similar situation to yourself https://www.memorycafedirectory.com/what-is-a-memory-cafe/

Meditation and relaxation practices can make a big difference to reducing stress levels and many of the symptoms from above https://www.trueexpression.co.uk

Arrange an up-to-date hearing and vision test as this will have an impact on what information we take in for our brains to process. We have recently found out that hearing loss can be linked to dementia and so checking this is very important, as hearing aids (if needed) can really make a difference https://rnid.org.uk/hearing-research/hearing-loss-and-dementia-how-are-they-linked/

It is also important to look into managing your financial affairs https://www.theretirementcafe.co.uk/ this will help you reduce your stress over time

It is also adviseable to consider your future care, this is known as advance care planning https://www.england.nhs.uk/wp-content/uploads/2022/03/universal-principles-for-advance-care-planning.pdf

And of course, you can follow my blog and Fb Page https://www.facebook.com/drjanemmullins

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Please note: whilst some of these links relate to the UK, they are relevant to wherever you are in the world.