What is young onset dementia?
Dementia is caused by diseases of the brain, which leads to a progressive decline in a person’s cognitive abilities. Their personality, mobility, behaviours and mood can be affected, along with their ability to think, communicate and remember.
When a person is diagnosed with dementia before the age of 65, their condition is referred to as ‘young onset dementia.’ It is also known as working age dementia, as diagnosis is given at a time when a person is expected to still be working with a career and other financial and personal responsibilities. People who have young onset dementia are often referred to as younger people with dementia. Symptoms can develop from as early as in your 30’s, 40’s and 50’s.
Dementia does not discriminate, it affects people of all ages, genders and ethnicities.
Signs and symptoms of young onset dementia
The symptoms of dementia will differ from person to person depending on the type of dementia they have and which parts of the brain it affects.
Memory issues are the most associated symptom with dementia, which can cause a person to become forgetful and repeat themselves a lot.
However, people with young onset dementia may also experience early changes in:
- Behaviour and personality
- Language and communication
- Movement and coordination
- Social and life skills
- Vision and spatial awareness
The early stages of young onset dementia and misdiagnosis
Certain changes may be very subtle in the early stages of dementia for younger people, meaning sometimes the signs of dementia can be missed or mistaken as another condition such as stress, anxiety, depression or the menopause. There is also a lack of awareness amongst GP’s and within the public in general, with dementia wrongly being associated with a condition that develops with old age.
What causes young onset dementia?
Dementia is an umbrella term for various progressive conditions affecting the brain. Dementia in younger people can be caused by the same range of diseases that cause the condition in people over 65, however there are significant differences in how dementia can affect younger people. For example:
- A wider range of diseases cause young onset dementia.
- A younger person is more likely to develop a rarer form of dementia.
- Young onset dementia is more likely to be inherited (passed on through genes). This affects up to 10% of younger people with dementia.
You can find out more about different types of young onset dementia and how they are caused by visiting our page on types of young onset dementia.
The likelihood of developing dementia will usually depend on a mix of factors like age, medical history and lifestyle, as well as our genes. Research suggests that risk factors are:
- Smoking
- Depression
- High blood pressure
- High blood sugar (diabetes)
- Being overweight or obese
- Drinking too much alcohol
- Being physically inactive
- Being socially isolated
To decrease your risk of developing a form of dementia, it is important to focus on having a healthy, balanced diet, limiting your sugar intake, exercising regularly, avoiding smoking and drinking too much alcohol and taking time to look after your mental health.
Nationally there are estimated to be at least 70,800 younger people with dementia which means 92 in every 100,000 of the population are living with young onset dementia.
Living with young onset dementia
Someone who is diagnosed under the age of 65 will need to adjust to living with a long-term condition as a younger person. This can feel challenging and overwhelming and they may be concerned about the effects their diagnosis will have on their family, relationships, finances and day to day life. They may also be concerned about their children or siblings carrying the same genetic variants which carry the risk of them inheriting dementia.
What help is available?
A word from our Trustee, Dr Jacqui Hussey
“Whilst currently there is no cure for dementia, there are medications that can help to manage the symptoms and slow deterioration for a while. These medications are most beneficial for Alzheimer’s disease and Lewy Body Dementia. Not everyone can have medications, but there are a number of other interventions and supports which can be helpful. Some Memory Clinics offer Cognitive Stimulation Therapy and educational materials for family supporters. There will offer advice on financial benefits such as Personal Independence Payments and Lasting Power of Attorney.
Support for family supporters is very important. They can have an assessment of their own needs though a carers assessment with social services. There may be local supports such as a Dementia Care Advisor or Admiral Nursing service.
For someone living with young onset dementia, the adjustment to loss of employment and role, reduced access to hobbies and interests can result in social isolation and psychological symptoms such as low mood, anxiety, boredom and agitation. There is evidence that purposeful activity improves quality of life and reduces psychological symptoms in both those living with dementia and their families. The message therefore is do not put off getting an assessment if you are worried about having dementia, for the sooner you get a diagnosis, the sooner you can access support.”
If you have any cause for concern regarding dementia symptoms, it is always a good idea to make an appointment with your GP. Speaking with a doctor early on can reduce any anxieties you have and provide you with answers.
How we help people living with young onset dementia
Our charity offers a range of support services from Monday to Friday for people living with young onset dementia.