Supporting people with early onset dementia

Most people tend to think that dementia only affects older people. However, approximately 42,000 people in the UK are affected by what’s known as ‘young onset dementia’ each year.

Any diagnosis of dementia is hard for the individual (and their family) to accept, however young onset dementia can be particularly challenging for everyone concerned, including healthcare professionals.

This short article aims to give a brief overview of early onset dementia. However, to fully support people, both through the initial stages after diagnosis and as the disease progresses, it is advisable to undertake specialist healthcare training to help patients deal with the inevitable grief and confusion.

What is meant by early onset dementia?

Young onset dementia (also referred to as ‘working age dementia’) is categorised as dementia in patients aged between 45 to 65 years of age.

As you’re probably already aware, dementia is not an illness in itself. It is the primary symptom of several different illnesses and types of trauma. The leading cause of dementia is Alzheimer’s Disease. This currently affects 850,000 people in the UK. This figure is growing: the Alzheimer’s Society state that by 2025 it will be one million. It is likely that the number of people aged below 65 who receive a diagnosis will also rise.

• Though Alzheimer’s is the leading cause of dementia in younger patients (around 34%), it is not the only cause.
• Vascular dementia is prevalent in around 18% of cases.
• For 12% of younger patients with dementia, the cause can be attributed to frontal-temporal lobe degeneration.
• 10% are classified as alcohol related.
• 7% with Lewy bodies.
• 19% with a variety of much rarer causes.

Ref: Harvey RJ, Skelton-Robinson M, Rossor MN. The prevalence and causes of dementia in people under the age of 65 years, Journal of Neurology, Neurosurgery & Psychiatry. 2003; 74: 1206-1209.

Symptoms

With dementia, disease or trauma causes a physiological change to the brain that progressively worsens. This impacts negatively on the patient’s cognitive abilities – their ability to think, remember and reason. It also affects their behaviour.

Over time, the brain damage worsens and the patient is increasingly unable to carry out daily tasks. Some of the symptoms of early-onset dementia can be similar to ‘late-onset’ dementia (found in elderly people).

However, it can also present in more unusual ways in younger people, and therefore can be difficult for families and healthcare staff to spot what is happening.

Symptoms in younger people can include:

• Memory problems which impact on day-to-day activities and functioning.
• Confusion in unfamiliar places / situations.
• Loss of sense of place / time.
• Problems communicating, e.g. not being able to find the right word or getting muddled.
• Problems recognising words or objects.
• Inability to judge speed or distance.

The relative low incident of early onset dementia in itself creates an issue. Spotting the early signs can be harder as it’s not something medical professionals may automatically test for in someone below 65.

This means that recognition, diagnosis and support can be slow to happen. Dementia training should include information to help you spot the signs of dementia in younger patients who present with a series of potential ‘red flags’.

Impact on quality of life

There’s no under-estimating the impact that early onset dementia can have. Even if patients have been displaying memory issues these are often attributed to stress (at work or home) or depression.

Following investigations (often initially for brain tumours and sensory conditions) to be told that you have what is thought of as an ‘old people’s condition’ can be devastating. People who have been holding down successful careers or raising young families can feel like their world has ended and will need a lot of support to come to terms with the diagnosis.

• Its important that you get support and training to adequately prepare you to support patients through such a shocking and bewildering diagnosis. It can be worth signposting patients and their families to specialist organisations, e.g. Dementia UK , who have dedicated resources for younger people with dementia and their families. They can advise on specialised, person-centred enabling services for people with young-onset dementia and their families.

Living well with early onset dementia

The fact that dementia can occur in people who are still working, who have family responsibilities and an active life, brings with it particular considerations.

Part of your role is to help the individual to ‘live well’ with their condition. Patient-centred care and therapies can help to preserve cognitive abilities for longer and play a substantial role in keeping patients emotionally and mentally positive.

For early onset dementia, this can involve working with the patient to find ways to preserve their independence, preferences and decision-making for as long as possible. For example, helping individuals to find ways to continue working. Or to fulfil their normal family-related activities, including safely caring for their children.

As people tend to be leading a more active life at this age, managing the complexities of cognitive impairment and behavioural changes can be far more difficult. Another aspect of your role can be to find ways to manage the expectations and reactions of other people, including loved ones and strangers.

Is early onset dementia hereditary?

There could also be considerable distress caused by fears that children could inherit dementia. Though there are potential familial forms of Alzheimer’s, these cases are very rare.

The causes of the disease are still largely a mystery and helping patients to cope with the ‘unknown’ can be challenging.

Healthcare training

The way dementia progresses and the affect it has on an individual’s life is very much an individual thing.

Specialist dementia training can provide you with skills and knowledge to recognise potential sign of early onset dementia as well as ways to support individuals and their families.