Gareth reflects on the challenges of caring for a partner with young onset dementia.
Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember. Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.
Dementia is described as ‘young onset’ when symptoms develop before the age of 65, usually between 30 to 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia, but these terms can cause confusion. ‘Early onset’ can be interpreted as the early stages of dementia and ‘working age’ is now less defined as retirement age is more flexible.
As dementia is frequently, and wrongly, thought of as a condition that is just associated with old age, the early symptoms of young onset dementia are not always recognised and may be attributed to other causes including depression, stress, menopause, physical health problems and relationship issues. This can lead to a significant delay (on average four years) in getting an accurate diagnosis and access to appropriate support. This can have a negative impact on not just the person with dementia’s life but also the whole family.
What differences are there to late onset dementia?
When compared to older people, younger people affected by dementia are more likely to:
- have a rarer form of dementia affecting behaviour and social functioning
- have a familial/inherited form of dementia
- report significantly higher psychological and physical distress
- experience employment issues
- have significant financial commitments such as a mortgage
- have a younger and more dependent family
- have additional caring responsibility for parents
There are differences in the types of dementia commonly diagnosed in younger people with dementia compared to those of an older age. For example, only about a third of dementias diagnosed in younger people are of the Alzheimer’s type in comparison to about 60% in the older age group. For more information visit our facts and figures page.
How does young onset dementia develop?
The early symptoms of young onset dementia may not be memory loss. Symptoms can differ from one person to another depending on the type of dementia a person has, and which parts of the brain it affects.
Dementias affecting the frontal and temporal lobes of the brain are more common in younger people so it is more likely that the early symptoms may include changes in:
- social functioning
- relationships with others
- activities of everyday living
- mood eg depression, anxiety
- concentration levels
- decision making and problem solving
- vision and spatial awareness
In addition, the person may not recognise the changes or may be reluctant to accept there is anything wrong when they are otherwise fit and well, and so put off visiting their doctor.
The needs of people affected by young onset dementia
People living with young onset dementia and their family members state that they need:
- early recognition of the signs and symptoms suggestive of dementia
- accurate and timely diagnosis
- awareness of their condition, especially from health and social care professionals
- specialist information at the time of diagnosis
- identification of a person who specialises in young onset dementia to support them and their family to work on a support plan to meet their needs
- better communication between agencies
- access to a specialist helpline
- support around employment issues
- emotional support and relationship counselling
- age-appropriate information, advice and support to stay active and maintain independence
- age-appropriate meaningful occupation and activities
- to feel connected to others
- peer support groups
- support to retain a life beyond caring
Early recognition and timely accurate diagnosis of dementia, combined with appropriate specialist support, can reduce the distress experienced by the person with young onset dementia and their family.
If you have any cause for concern, it is a good idea to make an appointment to see a doctor. Seeing a doctor early on can reduce anxiety and worry and provide you with answers.