(April 18th 2022) A new National Intellectual Disability Memory Service has been set up at Tallaght University Hospital (TUH) to treat people with intellectual disabilities who are at high risk of developing dementia. The new centre is called the National Intellectual Disability Memory Service (NIDMS), a partnership with the Hospital, Trinity College Dublin and AVISTA. Initially a trial clinic, permanent funding has been provided by the HSE National Dementia Office. It is the only one of its kind in Ireland with only a handful of such clinics available internationally.
Research conducted by Trinity College Dublin found that by 65 years of age, 80% of people with Down syndrome will develop dementia, with the average patient reporting early onset of the illness at the age of 51. This compares to a rate of dementia in the general population of between 4% and 8% in people aged 65 and older.
Despite this high risk, many people struggle to get a diagnosis and caregivers are often overwhelmed. The earlier that dementia is detected, the sooner supports may optimise quality of life for the person living with dementia meaning we must look proactively at prevention and have a greater focus on lifelong brain health. Diagnosis is complex, and for people with intellectual disability there is inequity of access to timely diagnosis. The NIDMS responds by fusing the expertise at the specialist regional memory service TUH, the extensive knowledge on dementia in people with intellectual disability at the Trinity Centre for Ageing & Intellectual Disability and with the expertise of a well-established dementia specific service and memory clinic for people with ID at AVISTA (previously known as the Daughters of Charity).
Prof Seán Kennelly, NIDMS Clinical Director and Director of the TUH Institute for Memory & Cognition says “This new Memory Clinic is a National Centre of Excellence and is rapidly improving the timely detection of dementia in people with an intellectual disability. I would like to pay tribute to the multidisciplinary team including specialist clinicians, nurses, psychologists, and health and social care practitioners. Their work in research and developing our dementia services over the past number of years has laid the groundwork for this important new service.”
The NIDMS service is guided by Professor Mary McCarron, a recognised global expert in dementia who is also the Director of the Trinity Centre for Aging & Intellectual Disability. She says “The new NIDMS clinic has already responded to a need for training and education for these patients and the people who care for them. Masterclasses were developed and delivered by clinicians, researchers and people with intellectual disabilities. More than 1,270 individuals registered from more than 200 service providers. Feedback was extremely positive.”
What happens when you’re treated by this new clinic?
The process starts with an initial phone consultation where doctors take a complete health history. There will then be a neuro-psychological assessment, involving the investigation of memory, cognition, and day-to-day functioning. MRI or CT scans may be taken to help doctors assess brain health. Bloods will be analysed and an ECG test run to evaluate heart function. In-depth interviews are also carried out with caregivers. The results are then discussed by a multi-disciplinary team who meet to decide on the best treatment options.
The new clinic also provides the following services for those with an intellectual disability
- A brain health check
- An individualised brain health plan - targeting modifiable dementia risk factors
- Educational programming on living well with dementia
- Delivery of accessible, easy to understand information on how to maintain and improve brain health
- Educational and training opportunities for people with intellectual disabilities, staff and family carers
- Access to and enrolment in research studies
One sibling of a loved one who has attended this new memory clinic said “My brother received a diagnosis of dementia. I found the whole process from assessment to post-diagnostic support so positive. I was listened to by the staff in NIDMS. My brother is benefitting from having the diagnosis as he now gets home care support hours. He enjoys the one-to-one time, walks and coffee with the paid carer, opening up a new social dimension he has not had previously. These few hours are also of huge benefit in allowing me to have some (rest) time.”
Importance of Brain Health Checks
An annual brain health check is recommended for adults with Down syndrome from 35-years in order to capture the person's optimal brain function and performance.
The Brain Health Clinic at NIDMS seeks to empower people with intellectual disabilities to take control of their brain health. An accessible Brain Health Workbook was developed to support people with ID to make their own brain health goals, while also recognising the need for support to realise change.
Dementia is progressive and has three main stages: early, middle and late, although each individual experiences changes in their own way and some features may appear earlier or later than others. The NIDMS works with families and providers to plan for adequate services to support the individual across the continuum of dementia, including at end of life.
NIDMS provides access to research projects for people with ID with dementia who have previously been excluded from clinical trials.
Current projects include:
- Prevent Dementia - which examines early biomarkers of Alzheimer's disease in people with Down syndrome
- Brain Buzzers Club which creates a space to learn more about brain health and related research
- Building Bridges is an effort in Dublin and San Francisco to hold tea breaks for people with Down syndrome to increase brain health awareness and to share tips
- NIDMS clinical research which builds an understanding of physical and cognitive trajectories of brain health
- Dementia Trials Ireland is ensuring the integration of people with intellectual disabilities into international clinical trials on dementia issues
- Camcog-DS2 & Camdex DS2 an international validation study of the Cambridge Cognitive Examination and Assessment tools for Older Adults with Down syndrome
So much has been achieved already and so much more will be achieved by NIDMS in ensuring that people with intellectual disability and dementia have the best possible services and opportunities for support, regardless of where they live in Ireland.