Intellectual Disabilities and Dementia A Local Perspective Dr Matt McMurray, Consultant Clinical Psychologist

Personal Stories Intellectual Disability Service Provision Drivers for Change Existing Services Work in Progress and Future Directions

John’s Story John is a 24 year old man with Down’s syndrome, he lives in a supported living setting with two other people with intellectual disabilities. He works in a shop three days a week and attends a college on two other days. John’s health is good and at the moment there are no concerns regarding dementia.

Peter’s Story Peter is a 64 year old man with a diagnosis of an intellectual disability and autism. He lives in a house with another man, and receives a high level of staff support. Before moving there 8 years ago he lived for many years in a long stay psychiatric hospital. Peter has recently retired from his training and resource centre, and enjoys walking, old movies and reminiscing about his school days. The staff who support Peter know him very well and are really tuned in to his support needs - often helping him manage when his anxieties get the better of him with reassurance and by helping him maintain good routines. Recently staff have become concerned about Peter’s wellbeing - they report that he is no longer able to remember details about his daily routines, including staff members names and what he might have had for lunch - on one occasion he was brought back from a walk by a member of public as he had become lost during a familiar journey.

Mary’s Story Mary is a 48 year old woman who lives in a residential setting with several other people with intellectual disabilities. She has Down’s syndrome and was diagnosed as having Alzheimer’s type dementia last year. Mary has always enjoyed good contact with her family - especially her mum and dad. Mary’s dad died 6 months ago and her mum has herself been recently diagnosed with dementia. Mary forgets where she is much of the time and her confusion about this and other areas of life can lead to her becoming very distressed.She does not remember that her father has died and sometimes does not recognise people who she has known for a long time. Staff supporting Mary find working alongside her very difficult - and are concerned about their ability to provide good care.

Intellectual Disability Services Provision “Since the original guidance was published there has been a far greater awareness about dementia in the general population and a proliferation of strategies and standards documents. However dementia and people with intellectual disabilities has still received minimal focus” (BPS, DCP, RCPsych; 2015)

Intellectual Disability Services Provision “There has been a serious dearth of service planning to meet the future needs of men and women with a learning disability as they age. This is reflected in the very limited local research, [and an] absence of a departmental steer on expectations of services to develop appropriate responses…” (DHSSPS, 2005)

Intellectual Disability Services Provision Population of people with an intellectual disability known to services in Northern Ireland: around 1% of population, approximately 18,000 people. Actual figure may be much higher. A population which is growing, and growing older.

Intellectual Disability Services Provision Reasons for increase include: increasing life expectancy (general population and specific to ID population). people with complex health care needs are living longer and healthier lives. increased numbers of children with an intellectual disability born in 1950’s and 60’s are now in the 50+ age group. Equal Lives document suggested an increase in population of circa 1.5% per annum for 15-30 years. Predicted an increase in the population of people with an intellectual disability over the age of 50 from 2200 to 3900 over 15 years. due to likely characteristics of that increasing population (more older people, increased likelihood of more complex needs) the predicted increase in resource was 15-25%.

Intellectual Disability Services Provision Other factors include: increasingly ‘dementia aware’ population: families, carers and staff. advances in our understanding of dementia and dementia care. more people with an intellectual disability living in their own homes.

Drivers for Change Increasing demand Improving Dementia Services in Northern Ireland - A Regional Strategy (DHSSPS 2010) Learning Disability Service Framework (DHSSPS, 2012) Dementia: supporting people with dementia and their carers in health and social care (NICE; 2006) Dementia and People with Intellectual Disabilities (BPS, DCP, RCPsych; 2015) Equal Lives (DHSSPS; 2005)

Drivers for Change “to ensure that men and woman with a learning disability are supported to age well in their neighbourhoods” Equal Lives (objective 8/12)

Drivers for Change : “All people with a learning disability should have access to dementia services at whatever age it becomes appropriate for the individual.” Learning Disability Service Framework (Standard 32)

Existing Services

Existing Services Wide variation in services. Tends to depend somewhat upon individuals or smaller groups who have developed a special interest in dementia in intellectual disability. Training availability, assessment processes and multi-disciplinary team support all vary.

Existing Services John - unlikely to receive any services as there is a lack of prospective screening services. Peter - staff may have had some training, there is significant variation across the country as to what services may be available to Peter. Often there will be some clinical psychology and psychiatry availability for assessment. At present in most areas there is a lack of a coordinated multi- disciplinary approach to assessment. Mary - staff may have had training, there are significant gaps in the availability of dementia specific multi- disciplinary treatment services.

Work in Progress Learning Disability and Dementia DSIG working group. Individual trust working groups. Scoping Exercise to establish availability of services including training availability. Development of learning disability and dementia pathways.

Future Directions John - prospective screening to establish baseline information should be available when people with Down’s syndrome are healthy and well. Peter - when concerns arise there should be a co-ordinated multi- disciplinary response to assessment, as articulated by an agreed integrated care pathway. Mary - staff supporting Mary should have access to training and support, which can be ongoing and tailored to her needs at that time. As far as possible the environment where she lives should be made dementia-friendly, and efforts made to allow Mary to continue living in her residential home. Multi-disciplinary support should be available for Mary and those supporting her.