What is 'Young Onset Dementia'

Dr. Mary Tilki PhD, MA, BA, RN, RNT

Description of the condition.

'Young onset dementia' which is also known as 'early onset' or 'working age' dementia and is so called because it occurs before the age of 65. It is results from disorders of the brain which can affect the person’s ability to think, reason, and communicate and is different for everybody. Although recent memory can be affected, changes in personality, mood and behaviour are generally more of an issue than memory.

Because of the younger age of the person and differences in how young onset dementia presents, the signs and symptoms may not be recognised. People may be anxious about what is happening to them, blaming things like work, relationships or stress in their lives. They may be reluctant to seek help but professionals may also have difficulty in making a diagnosis.

Although getting a diagnosis of dementia at any age is frightening, being diagnosed when you are still working, raising children or caring for older relatives is additionally worrying.

However, with the right kind of information, help from professionals, family, community and support from other people with dementia it is possible to recover and retain many aspects of your former life.

Peaceful Place offers a facility where people with young onset dementia and their carers can get information, support and above all opportunities to remain socially connected and part of society.

Although the diagnosis of young onset dementia can be complicated and take time, the earlier assessment is sought the better. People will benefit and hopefully gain reassurance from information which is easy to process and is from the perspective of other people with young onset dementia. An earlier diagnosis can enable the person and those close to them to adapt their lives and learn to live as independently as possible with dementia. They can utilise their strengths and abilities to remain active and involved and ensure they are fully involved in planning for the future.

At Peaceful Place people with young onset dementia play to their strengths while learning to prevent problems and cope with their limitations. Although significant professional information, advice and support is provided, the strength of Peaceful Place is sharing experience with others in the same position and learning from people who understand what it means to live with young onset dementia.

While enjoyment and socialising with others are beneficial in their own right, Peaceful Place provides stimulation, opportunities to learn new skills while up-dating or re-learning old ones in a safe, non-judgemental, fun environment.

Peaceful Place offer hope in a time of hopelessness.

Signs and symptoms.

Dementia before the age of 65 (Young Onset Dementia) presents differently to the dementia that occurs in older people and it can be less easy to diagnose. Memory and orientation are affected less than other aspects of living such as problem- solving, behaviour, language and mobility.

Sometimes family members or colleagues notice changes before the affected person recognises or admits that something strange is happening to them. Because dementia is usually associated with old age and because the signs and symptoms are different, people including professionals rarely think dementia might be the reason for changes in behaviour.
Those developing young onset dementia may find they have difficulty with planning or carrying out tasks which they previously had little trouble with. They might find they have a lack of concentration and are unable to complete everyday tasks at home or at work. They may find it hard to make decisions and end up wearing the wrong clothes for the weather or repeatedly buying bread or milk which they don’t need. They may have trouble losing things or forgetting where they placed them, but are unable to retrace their steps to locate them as they might have done before. They can get lost in familiar environments or find themselves somewhere unexpected without knowing how they got there.
Problems with speaking or writing are not unusual, such as losing the thread of a conversation, not finding the right word or naming familiar objects incorrectly.

If the person is aware of this, they may avoid or withdraw from social situations which families may see as apathy and disinterest, but professionals tend to label as depression.

Although depression can be a real aspect of young onset dementia, it is not an unexpected response to what is happening to the person. However it can also mask the condition and delay diagnosis.

Perhaps one of the most significant things that relatives, friends or colleagues notice and find difficult to deal with, is the change in behaviour which occurs when somebody gets young onset dementia. Clearly everybody is different, but those close to the person may notice changes in personality, mood and behaviour. This may take the shape of moodiness, short-tempered, aggressive or impulsive outbursts. The person may display behaviour or language which is offensive, inappropriate and out of character. This generally contributes to strained personal relationships or problems at work. Some people with young onset dementia may become detached, withdrawn and apathetic which is equally difficult for family or colleagues and can be mistaken for depression.

Depending on the specific type of dementia involved, people with young onset dementia can have visual problems which cause difficulty reading, depth and colour perception. They may also have problems with moving, walking, coordination and balance. These symptoms might be caused by other physical or neurological disorders but have to be excluded, thus delaying a diagnosis.

Because people with young onset dementia can still function and seem fit and well, they may be thought of as too young to have dementia. Changes may be blamed on stress at work or in family life, bereavement, menopause, financial or relationship problems. While these may be a real issue given the time of life when young onset dementia occurs, they can delay the diagnosis and risk decline.

Although dementia is progressive and as yet there is no cure, much can be done to help the person and family. The earlier the diagnosis is made, the better for all concerned. This allows the person to be involved as fully as possible, maximising their strengths while finding acceptable solutions for the problems they face. Although professional information and advice are important, learning what works for others in a similar situation can be much more practical and acceptable. Information and support accessing benefits and services and guidance around planning can make the person and family more confident in looking towards the future.