A staggering 1 in 3 people with Down’s will develop dementia in their 50s and 1 in 10 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 to ensure they get access to an 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.
Phil Freeman from the, Dementia Action Alliance, said early diagnosis was one of the core issues that had to be tackled.
He said: “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.”
The group is calling on the Government to accelerate its plans for a fully integrated health and social care system as one of the ways to improve this care pathway.
Phil Freeman also added that a high rate of misdiagnosis was a real issue for the LD and Down’s community.
He said: “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.
“Skilled organisations need to be able to spot early warning signs in already challenging circumstances.
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.
The calls for change came out of a roundtable meeting on June 8th to improve support for ‘seldom heard groups’ minority communities that are often overlooked within dementia care.