Dementia diagnosis vital for people with an intellectual disability

People with an intellectual disability need access to dementia diagnosis. This was the clear message from the inaugural webinar of the National Intellectual Disability Memory Clinic in Tallaght University Hospital which was jointly organised by Trinity Centre for Ageing and Intellectual Disability (TCAID) at Trinity College Dublin to mark World Alzheimer’s Day.

TCAID’s partners in the Clinic are Tallaght University Hospital (TUH) and the Daughters of Charity Disability Support Service.

Brain health and dementia are important topics for adults with an intellectual disability. Trinity research has shown that the risk of dementia is very high in people with an intellectual disability and especially those with Down syndrome. By 65 years of age, 80% of people with Down syndrome will develop dementia with the average age of onset at 51 years of age. This compares to a prevalence of dementia in the general population of between 4.6% and 8.6% in people at 65 years and older.

People with an intellectual disability are now living to older age, a great success story of which health and social services, families and people with intellectual disabilities themselves, can be very proud. Despite these improvements, people with intellectual disabilities continue to experience greater and more complex health and social issues than their peers in the general population. The Memory Clinic at TUH aims to address some of those issues directly by providing diagnosis, post-diagnostic support and promoting prevention strategies and brain health.

The Clinic, which is a pilot service developed with the support of the HSE National Dementia Office and funded through the Dormant Accounts Disbursement Fund, is operating on a part-time basis from TUH. It runs in parallel with the mainstream Memory Assessment and Support Service[1] there and uses the expertise of an Advanced Nurse Practitioner and a Clinical Nurse Specialist from the Daughters of Charity Disability Support Services. The Clinic can take referrals from GPs or psychiatrists who have a concern about someone with an intellectual disability.

The service is guided by Professor Mary McCarron, TCAID, a recognised global expert in dementia among this population. She and her team are developing training support to the Clinic and are researching what the Clinic is achieving over the coming year.

Key messages from the webinar

  • People with Down syndrome are at high risk of developing dementia with over 80% of people over the age of 65 years presenting with symptoms with an average age of onset at 51 years.
  • Despite this high risk, many people struggle to get a diagnosis and caregivers are often overwhelmed.
  • The earlier that dementia is detected, the sooner support can be put in place to optimise quality of life for the person living with dementia.
  • Given the high risk, we need to look at prevention and have a greater focus on brain health.
  • To address this inequity, a National Memory Clinic for people with ID has been developed in partnership between TUH, Trinity College Dublin and the Daughters of Charity Disability Support Service.
  • This Clinic is supported by the HSE National Dementia Office and has been funded through the Dormant Accounts Disbursement Fund.

 

Executive Director of the Clinic, Professor Mary McCarron, Trinity Centre for Ageing and Intellectual Disability (TCAID) said:

There has been a real urgency in Ireland to develop skills in dementia recognition and assessment for people with an intellectual disability. For families and caregivers, there has been a real struggle to get a proper diagnosis of dementia. Now that the National Clinic is up and running, we are seeing a need to understand dementia and to provide advice on what can be done, both around medication and other interventions, and how families and caregivers can be supported as the condition progresses. At the same time, we must also promote brain health and dementia prevention within this population.

Clinical Director of the Memory Clinic Professor Sean Kennelly, Tallaght University Hospital said:

TUH has developed over time as a centre of excellence for dementia care and cognitive research, we know from the mainstream memory assessment and support service that is running since 2016 that proper diagnosis is the vital first step towards providing the kinds of supports that people need. And the earlier we can diagnose, the better. Without diagnosis, health services cannot move forward with a patient. Our specialist Clinic, the first of its kind in Ireland, is in keeping with Tallaght’s aspiration to move thinking forward about dementia in this country. This clinic will influence the mainstream service and will benefit from what we have learned in Tallaght.

CEO of the Daughters of Charity Disability Support Service, Natalya Jackson said:

The Daughters of Charity Disability Support Service has built a reputation over many years in providing quality care and support for people ageing with an intellectual disability who develop dementia. It is a privilege for us to use our knowledge and expertise in the development of this national service for people with an intellectual disability across Ireland. At the same time, we understand that dementia care does not stop at diagnosis. We have been fortunate to support people to continue living a full life as their dementia develops and to progress the conversation on the ongoing care and commitment in this area.

General Manager of the National Dementia Office, Mary Manning said:

Ireland has come on an important journey around dementia over the past few years. Many people now feel able to speak openly about their condition and to tackle stigma and prejudice. The National Dementia Office has always been committed to an inclusive approach and appreciating that groups such as people with an intellectual disability need services that can support them. What’s clear from today’s webinar is how we need to make sure that support is there when people need it.

The webinar was supported by the ‘Dementia: Understand Together Campaign’.

[1] Launched in 2016, the multi-disciplinary TUH Memory Assessment and Support Service is a national referral centre for all adults with memory and cognitive symptoms, leading the way in promotion of brain health, provision of comprehensive assessment, and holistic post-diagnostic support for people living with dementia and their supporters.