ADDRESSING THE UNSEEN: YOUNG ONSET DEMENTIA

A great deal of investment has gone into cancer care.  In the media it has been mentioned that 3,000 people are diagnosed with cervical cancer a year, with vaccinations now being available to help its eradication.  Nearly everyone is aware of this condition.  Against this there are estimated to be at least 70,800 people living with a diagnosis of young onset dementia in the UK, with no known cure.  Most people are not aware that you can get dementia at a younger age, in your 30s, 40s, 50s and 60s.  In fact, 7.5% of people living with dementia are under the age of 65 in the UK.  When people have symptoms before the age of 65, it is termed young onset dementia.

When people first develop the symptoms of young onset dementia, they are likely to be in employment and to be physically active.   As memory and communication difficulties emerge, this can make it more challenging to maintain performance at work. By the time of a diagnosis of young onset dementia, 80% of those in the UK will have stopped working, with consequent financial implications.

Having dementia at a younger age can bring about specific problems. Our ambitions, hopes and expectations are different at different stages of life. There are often psychological, relationship and social implications for both the person affected and their partners which are inevitably different from those diagnosed with dementia at an older age.  This is a time when we may be still raising children, enjoying holidays, sports, hobbies and social time with friends.

Dementia can also affect relationships especially when children are younger. Dementia in a parent can lead to increased anxiety for children at a time when they need parental support, this could be when they are taking exams, exploring future career options or just wanting to share aspects of their day. Children can undergo loss and insecurity and may become carers to their parent.

In many cases, family supporters also have to give up work to support their partner and this leads to an increased financial burden, emotional stress and social isolation. The ability to provide support and respite on a daily basis is often pivotal to keeping family supporters in work. Studies have shown that the cost of illness in younger persons with dementia are up to 16 times those of older people.

 

Whilst there are estimated to be just under 71,000 people living with young onset dementia in the UK, less than half of these are known to GP practices. This is for a number of reasons.

• Lack of awareness that dementia can occur at younger ages. Some symptoms can be put down to depression, stress or even hormonal imbalance. It can take many years for people to get the correct diagnosis.
• There are more rarer causes of dementia, including genetic, in someone younger and initial symptoms may not be typical of those we normally associate with dementia, particularly in the early stages of the illness. Other symptoms can include difficulty with word finding and other language difficulties, personality change, changes in visual perception or clumsiness.   Appropriate investigations can therefore take longer to obtain.
• Individuals themselves may not recognise or want to recognise that they are having difficulties, particularly when they are otherwise feeling fit and well. This could be because of fear of the future, concerns about the impact on their family, their career or even a belief that there is nothing that can be done, so they may simply deny there is a problem and won’t go to their GP.

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.

It is against this background that the charity Younger People with Dementia CIO (YPWD) was formed in 2012.  YPWD run weekday age-relevant workshops such as a choir, gardening, art, and sports like wall climbing, katakanuing, cycling and racket sports.  These provide purposeful activity but also peer support and a sense of normalcy. Whilst the YPWD charity currently runs these activities in Berkshire, Surrey Heath, NE Hants and Farnham, it has a number of resources available on its website. Shared reading also has therapeutic benefits and YPWD has also published 3 reminiscence books.

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.  In addition, YPWD also provide specific services to support the carers of those diagnosed with young onset dementia.  These take the form of carer support groups, the support of an Admiral Nurse, education courses, social activities and peer support.  YPWD are also in the process of developing services for children of those with a parent with young onset dementia.

YPWD has published outcomes achieved within the Journal of Dementia Care and been recognised by the Royal College of Psychiatry.  Outcomes include:

• Reduction in NHS contacts with clients.
• Prevention of admission to 24-hour care.
• Reduction in prescribing of antipsychotic medication.
• Reduction in carer stress.
• Reduction in social isolation.
• Slower deterioration in cognition.
• Improvement in neuropsychiatric symptoms of dementia.

Our YPWD philosophy is that by thinking differently about dementia, offering tailored and age- related intervention, individuals with young onset dementia can be supported to live well and access meaningful activity.

 

MEDIA ENQUIRIES

For more information about YPWD, please contact Charlie Draper at 0118 207 2880 or Charlie.draper@ypwd.info

 

YPWD operates within Berkshire, Surrey Heath, NE Hampshire and Farnham and supports people living with young onset dementia (also known as working age dementia). This is a progressive disease diagnosed in those aged 65 and under. Through education, workshops and support we are helping people to live well and think differently about dementia. Whilst we are a local charity working within the community, this book allows us to do something different: reach a wider audience and raise awareness. www.ypwd.info

 

Notes to Editors:

Young People with Dementia

• Younger People with Dementia (YPWD) aims to support people living with dementia diagnosed under the age of 65 and their family and carers.
• The needs of younger people with dementia and their carers differ greatly from older people.
• Young Onset Dementia affects adults between the ages of 30-64.
• 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.  According to the Journal of Dementia Care Report (Carter and Jackson June 2022 Vol 30 No 3), 7.5% of all people with dementia developed it under the age of 65.  In Berkshire, there are an estimated 679 people living with young onset dementia and 900 in Surrey.
• Traditional services are designed to meet the needs and expected therapeutic out-comes of older adults and subsequently, access to activities appropriate for younger adults with dementia is limited.
• People with young onset dementia often experience a more rapid decline in cognition and quality of life at a time when they may otherwise have expected to be in employment and to have an active social life. The same applies to partners and other family members who consequently face social isolation and carer stress(Deliane van Vilet, 2010).
• In many cases, carers have to give up work to support their partner and therefore, the ability to provide respite on a daily basis is often pivotal to keeping carers in work.
• For the person with dementia, lack of appropriate activities can result in an increase in social isolation, apathy, a decline health and increased risk of behavioural and psychological symptoms of dementia.
• Having dementia at a younger age is associated with a greater number of unmet needs and unmet needs are associated with an increase in neuropsychiatric symptoms. This, together with increased carer stress, is major risk factor for institutionalisation. (Bakker, 2013). Specifically, the study found that an increase in the number of unmet needs leads to the occurrence or worsening of neuropsychiatric symptoms.
• Studies have shown that the indirect cost of illness in younger persons with dementia (informal care cost, treatment and mortality costs) are up to 16 times those of older people.