Learning Disability Today
Supporting professionals working in learning disability and autism services

Learning disability community ‘ignored’ in dementia debate


People with a learning disability are significantly more likely to get dementia yet they are largely left undiagnosed and without the support they need, warn the Dementia Action Alliance. 

One in three people with Down’s Syndrome will develop dementia in their 50s and one in ten with a learning disability will develop young onset Alzheimer’s disease.

As improvements are made in the life expectancy of people living with a learning disability this situation is set to worsen.

Now leading experts, officials and campaigners are calling on the Government to do more to protect these vulnerable people and ensure they get access to early diagnosis and the tailored care they require.

The group, working in coalition as the Dementia Action Alliance, is demanding that the current debate around best care pathways for people with dementia takes into account the needs of this all too often ignored group of people.

Early diagnosis a ‘core issue’

Phil Freeman, pictured, from the Dementia Action Alliance said early diagnosis was one of the core issues that had to be tackled.

“A person with a learning disability may not fully understand a diagnosis of dementia or what it will mean for them. Early diagnosis helps individuals understand what is happening to them and make choices about their future.

“In addition, people with a learning disability often also have other complex health needs, and this, combined with a diagnosis of dementia makes their care pathway very unclear. They fall through the gaps and don’t get the support they need – we must rectify this.

“People with learning disabilities may present with behavioural changes rather than memory loss.

“Symptoms may be mistaken for a pre-existing disability and therefore they are less likely to receive a timely diagnosis. Ultimately this means more avoidable deaths when poor judgements are made about quality of life and treatments.”

The call for reform comes from some of the leading voices in the LD and adult social care sector including: MacIntyre, Royal College of Nurses (RCN), Mental Health Foundation, National Care Forum, Mencap, ADASS, Carers Trust, Health Education England, LGA and others.


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