Challenge. Caring for the increasing numbers of people across Europe with advanced dementia and palliative care needs who live in care homes is difficult and demanding. People with advanced dementia can be immobile, non-verbal and unable to take part in day-to-day activities. They can be unsettled or agitated, with low quality-of-life and elevated levels of discomfort. Family members can find it difficult to connect meaningfully with their relative and are anxious about the future.
1 in 10 people in Ireland who are diagnosed with dementia are aged under 65, and this is termed “Young Onset Dementia”. The impact of a diagnosis at this time of their lives is huge, and also greatly impacts families, where young children may be involved. However, services in Ireland have typically overlooked this group, being targeted towards the needs of a much older population.
Young onset dementia (YOD) varies in many respects to typical aged dementia. The person with YOD will live with an increasing number of cognitive, neurological, psychological, emotional, economic and social changes. There are about 4,000 people with YOD in Ireland. A recent Irish report on YOD (Fox, Cahill, McGowan, & Kilty, 2020) emphasised the urgent need for improved health services and community supports to provide comprehensive and individualised care for Irish people living with YOD.
We are conducting a survey and in-depth interviews to find out what are the support/service needs of people living with different types of dementia and their care partners, i.e. what services they have or would like access to/what resources would help to improve their quality of life.
Aim: To set priorities for research to inform health and social care planning for people with LBD and their care partners in Ireland.
Specifically, this project will:
Objective 1: Identify the evidence gap and priority needs for LBD by incorporating multiple stakeholder perspectives, with strong 'patient and public involvement (PPI)', based on gold standard JLA methods.
No new Alzheimer's drug treatment had be licensed for 20 years until 2021, when the first Alzheimer's disease-modifying therapy (DMT) was licensed in the USA, giving hope of slowing/reversing the disease. Several new DMTs are expected. Unfortunately, offering DMTs in Ireland requires significant changes in Memory Clinic set-up, due to high drug costs and need for careful monitoring. Moreover, DMTs only work in people in early Alzheimer's, which is often unrecognized in Ireland.
Lewy body dementias (LBD, including Parkinson's dementia and Lewy body dementia) accounts for >20% of the nearly 65,000 people with dementia in Ireland. LBD is ‘the most common form of dementia no-one has heard about’. Fewer than 5% of those affected receive a formal diagnosis. LBD is characterised by cognitive-behavioural and physical changes which significantly impact quality of life and care burden. Knowledge, awareness and support in Ireland for LBD is minimal.
Parkinson’s disease is a debilitating disorder characterised by movement disorders, including tremor, cognitive dysfunction and non-motor impairments. It is the second most common age-related neurodegenerative disease with ~10 million sufferers worldwide, but the causes of tremor are poorly understood and treatment is wholly inadequate.