What is Dementia?
Dementia is a disease that affects the brain.
Our brain controls how we think, remember, communicate, solve problems, and carry out everyday tasks.
For example, it helps us:
Get dressed.
Prepare meals.
Go for a walk.
Talk to other people.
Remember important information.
As dementia progresses, the brain becomes less able to do these things.
A person with dementia may:
Forget people, places, or recent events.
Remember things that happened many years ago but not what happened a few minutes ago.
Become confused.
Have difficulty finding the right words.
Lose everyday skills, such as using a knife and fork or managing money.
Dementia in People with Disabilities and Health Conditions
Dementia affects people with and without disabilities.
However, for people who already have a learning disability, autism, communication difficulties, epilepsy, or other long-term health conditions, dementia can bring extra challenges.
It can sometimes be harder to recognise dementia because the person may already have communication or memory difficulties. Health professionals need to look for changes from the person's usual abilities rather than comparing them with other people.
Although dementia affects everyone differently, people with disabilities deserve the same respect, support, and access to healthcare as everyone else.
Being Misunderstood
People living with dementia are sometimes unfairly labelled as:
"Crazy"
"Senile"
"Not all there"
"Hopeless"
"Past it"
These labels are hurtful and untrue.
People with dementia are still the same people underneath. They deserve dignity, kindness, patience, and understanding.
Many people with lifelong disabilities have experienced being misunderstood throughout their lives. Developing dementia can make this even harder.
Memory Loss
People with dementia may find it difficult to:
Remember conversations.
Remember what they have read or watched.
Learn new information.
Remember what they were doing.
Carry out familiar tasks.
Some people remember events from many years ago but struggle to remember what happened a few minutes earlier.
My Personal Experience
As a child, I took strong medication for epilepsy. The medication affected my awareness, learning, and memory.
My memory was much worse than it is today. This sometimes caused misunderstandings with adults and led to bullying from other children because they did not understand what I was experiencing.
After I stopped taking the medication, my memory and learning slowly improved over the next few years. I gradually became more independent and gained confidence in everyday life.
My experience taught me how important it is for professionals to understand that memory difficulties can have many different causes and should never simply be dismissed.
Epilepsy and Dementia
Researchers continue to study the relationship between epilepsy and dementia.
Some studies suggest that certain people with epilepsy may have a higher risk of developing dementia later in life, but having epilepsy does not mean a person will definitely develop dementia.
I have lived with epilepsy since birth. My seizures stopped when I was 12 years old and returned between the ages of 31 and 43 before stopping again.
I have also experienced anxiety, and I know from personal experience that panic attacks and seizures can sometimes be confused because they can share some similar symptoms.
Speech Problems and Dementia
Having speech or communication difficulties does not automatically mean a person is at greater risk of dementia.
Speech problems can occur for many different reasons, including stroke, neurological conditions, developmental disabilities, hearing loss, or lifelong communication disorders.
If someone develops new or worsening communication problems, they should always be assessed by an appropriate healthcare professional.
Learning Disabilities and Dementia
Some people with learning disabilities have a higher risk of developing certain types of dementia.
People with Down syndrome have the highest known risk of developing Alzheimer's disease because of genetic factors.
However:
Not everyone with Down syndrome develops dementia.
Not everyone with a learning disability develops dementia.
Many people with disabilities never develop dementia.
Every person is different.
Different Types of Dementia
Alzheimer's Disease
The most common type of dementia. It mainly affects memory, thinking, and problem-solving.
Vascular Dementia
Caused by reduced blood flow to the brain. It can occur after one or more strokes or from damage to small blood vessels.
Dementia with Lewy Bodies
Caused by abnormal protein deposits called Lewy bodies in the brain. It shares some symptoms with Parkinson's disease, but not everyone with Parkinson's develops dementia.
Living with Dementia
People with dementia may:
Become confused.
Lose confidence.
Need support to stay safe.
Repeat questions or conversations.
Forget where they are going.
Have difficulty recognising people or places.
Become upset when they realise their memory is changing.
Some people may look in the mirror and feel confused because they do not recognise the older person looking back at them.
Support
With the right support, many people with dementia continue to enjoy meaningful lives.
Support may include:
Family and friends.
Healthcare professionals.
Dementia specialists.
Occupational therapists.
Speech and language therapists.
Social workers.
Community support services.
Professionals should always involve the person with dementia as much as possible in decisions about their care while respecting their rights, dignity, and independence.
If there are concerns that a person is no longer able to keep themselves safe, professionals should follow local safeguarding laws and procedures to make sure the person receives the support they need.
Final Thoughts
Dementia changes a person's memory and thinking, but it does not change their value as a human being.
People with dementia should be treated with patience, kindness, understanding, and respect.
The better we understand dementia, the better we can support those who live with it and the people who care for them.
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