In the latest in our series from Pulse Live talks, Dr Nerida Burnie, a GP with a special interest in dementia, introduces the role of primary care in young-onset dementia
Dementia is a degenerative condition of the brain resulting in progressive cognitive decline, most commonly associated with older people. Young-onset dementia is where symptoms start before the age of 65 years.
There are other key differences between dementia of older age and young-onset dementia. For most older patients, short-term memory loss is a key feature but it is less common as a first symptom in younger patients. Young-onset dementia is more likely to be a rarer subtype of dementia, and to have more rapid progression of symptoms.
Clinicians in primary care have an important role in:
- Identifying patients with possible young-onset dementia
- Understanding local referral pathways to help ensure there is a timely diagnosis
- Offering people post-diagnosis support that fits their specific needs
Primary care clinicians are also key in supporting carers and family members of people affected by young-onset dementia.
Incidence and prevalence
Around 7.5% of people living with dementia in the UK have young-onset dementia.1 People with learning disabilities are most at risk. Rates are higher in black and minority ethnic groups. Some cases have genetic links and are inherited conditions, but others are sporadic cases.
So rather than short-term memory loss, presenting symptoms for someone with young-onset dementia may include problems with:
- Speech and language
- Vision or perception
- Movement, such as shuffling gait, muscle stiffness or balance
- Personality and behaviour
- Visuospatial awareness, such depth perception, identifying an object or face recognition
- Planning or performing activities of daily living, such as getting dressed, using a TV remote or household appliances
- Anhedonia and apathy
Pathway to diagnosis
It takes on average 4.4 years from first presentation to a GP for a person to be diagnosed with young-onset dementia.3 This delay can significantly increase the stress on the individual and those close to them. Commonly, people are initially misdiagnosed with stress, depression, anxiety or menopause. The role of primary care is to consider the possibility of young-onset dementia and to make the referral via the local pathways. These pathway may be to the memory-assessment service, neurology service or perhaps a specialist centre or research centre. It will look different depending on local services.
The Young Dementia Network and the RCGP have put together a useful resource, Diagnosing dementia in younger people – a decision making guide for GPs.
The consequences of diagnosis for a younger person diagnosed are different to those for older people. The person may be still working when diagnosed. They may have children at home for whom they are responsible, or dependent parents they are caring for. They may have large financial commitments like a mortgage.
The diagnosis of young-onset dementia and the progression of cognitive impairment will negatively impact the ability to continue working and earning a living. People will often be otherwise physically fit and healthy, with few comorbidities. This can make care decisions difficult. Finding age-appropriate, suitable and meaningful occupations and activities can be hard. Most day centres and group activities focus on the needs and interests of people over the age of 75. Also, carers supporting younger people with personal care and activities of daily living will need to adapt, allowing them to remain physically active but in a safe and supportive environment.
Due to the possible inherited nature of some types of young-onset dementia4, the family may need to have discussions around genetic testing. There are always pros and cons to genetic testing. While the testing would often be undertaken in a specialist clinic, primary care can provide important advice and support for families going through this process.
As with many conditions, predicting the course of young-onset dementia is difficult. As a general rule, patients are likely to have a more rapid decline in cognition than older patients. There is also a shorter life expectancy for patients with dementia other than Alzheimer’s disease when compared with Alzheimer’s.
There is currently no cure for dementia. There is no disease-modifying treatment yet available in the UK outside of research studies.
Several treatments can be used to help manage symptoms and possibly slow progression of dementia. These are the same as used for Alzheimer’s disease in older people. Most commonly used are donepezil, rivastigmine, galantamine and memantine.
Supporting carers and families
Any family supporting a person with dementia has challenges, and in young-onset dementia it’s no different. What is different is the types of symptoms they may be dealing with on a day-to-day basis.
Having a GP and primary care team who are aware of young-onset dementia and its specific challenges is helpful. Facilitating a timely and accurate diagnosis is vital for patients and carers. It is also helpful if there is good communication between all agencies involved in the care and support of the person: specialists, social care, care agencies, respite carers. Primary care teams are uniquely placed to be an important part of the lives of patients with young-onset dementia and their families.
- Carter, J. Prevalence of all cause young onset dementia and time lived with dementia: analysis of primary care health records. Journal of Dementia Care 2022,30,1-5. Link
- NICE. Clinical Knowledge Summary: Dementia. December 2022. Link
- Bakker C et al. Needs in early onset dementia: a qualitative case from the NeedYD study. American Journal of Alzheimer’s Disease & Other Dementias 2010;25:634-40. Link4 Alzheimer’s Society. Is dementia hereditary? Link
- Alzheimer’s Society. Is dementia hereditary? Link
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