Supporting early diagnosis and interventions for dementia in people with learning disabilities

Dementia is a significant concern in an ageing population - The World Health Organization (WHO) has estimated that around 50 million people worldwide have dementia and there are 10 million new cases each year [WHO, 2020b]. Dementia rates are notably high in people with learning disabilities, particularly in individuals with Down’s syndrome, who are at a higher risk and may develop dementia at a younger age than the general population. Alzheimer’s UK set up Dementia Action Week, an annual campaign to raise awareness and take action on improving dementia diagnosis rates. We are signposting resources to help support early diagnosis and interventions for those at risk of dementia.

Dementia describes a syndrome resulting from various illnesses, leading to a progressive decline in multiple areas of function. This includes memory, reasoning, communication skills, and daily activities. Additionally, behavioural and psychological symptoms like depression, psychosis, aggression, and wandering can emerge at any stage, complicating care.

The National Dementia Strategy: Living well with dementia (DH, 2009) is equally applicable to people with learning disabilities. This strategy is based on three key principles:

Improved awareness and understanding of dementia: Addressing and removing the stigma surrounding dementia.
Early diagnosis and intervention: Ensuring timely and accurate diagnosis and starting interventions early.
Improving the quality of care: Developing a range of services to meet the evolving needs of people with dementia and their carers.

It's crucial to remember that dementia is a progressive illness requiring continual re-evaluation of care to meet the person's changing needs.

Resources

Here are some valuable resources to support individuals with learning disabilities at risk of dementia:

Down’s Syndrome Association: www.downs-syndrome.org.uk
BILD: www.bild.org.uk
BPS / RCPsych Joint Guidance: Assessment, Diagnosis, Treatment and Support of People with Learning Disabilities and Dementia - www.dcp-ld.bps.org.uk
Quality Outcome Measure for Individuals with Dementia (QOMID): QOMID
Living Well with Dementia Easy Read Guidance: Living Well with Dementia
Improving Health and Lives: [www.improvinghealthandlives.org.uk](https://www.improvinghealthandlives.org.uk/
Source: NHS Strategic Health Authority Learning Disabilities Health Programme
The Alzheimer’s Society have a support line. Call: 0333 150 3456 (A call to an 0333 number costs the same as a call to a normal home or business landline. )
If you are affected by dementia, worried about a diagnosis or a carer, trained staff are ready to give you the support you need.
Opening hours: Mon to Weds: 9am–8pm, Thurs and Fri: 9am–5pm, Sat and Sun: 10am–4pm
The Dementia Support Line will be closed on Bank Holiday Monday 27th May, reopening as normal the following day.
Dementia UK offer a free, confidential Dementia Helpline staffed by dementia specialist Admiral Nurses who provide information, advice and support with any aspect of dementia, including Alzheimer’s disease. Their Helpline is open Monday to Friday 9am to 9pm and Saturday and Sunday 9am to 5pm; every day except 25 December.
Phone: 0800 888 6678
Email helpline@dementiauk.org
Fill in this form to speak to a dementia specialist Admiral Nurse https://www.dementiauk.org/information-and-support/how-we-can-support-you/admiral-nurse-dementia-helpline/