Comment: Dementia Prevention

World Alzheimer Day

“I will monitor the implementation of the priority actions of The National Dementia Strategy and will call on the Government to take a proactive approach to resourcing additional actions not resourced in the strategy rather than waiting for required resources to ‘become available’.”

Dementia is a global social and economic emergency. There are currently almost 47 million people living with dementia. That figure is predicted to double every 20 years to reach 132 million by 2050. One new case is diagnosed every 4 seconds.

The identification of modifiable risk factors that have the capacity to protect individuals from the onset and progression of dementia represent a wonderful opportunity to develop and implement strategies to raise awareness of the importance of brain health and reduce dementia risk and burden.

The time has come to move from a singular focus on treatment and management to a focus that prioritises prevention and research. A public health approach that addresses vascular risk factors, like high blood pressure and cholesterol, and lifestyle risk factors, like diet, sleep, exercise and social and intellectual engagement, could prevent up to 30 percent of dementia over the next 20 years.

The factors that influence brain health and dementia risk, including low educational attainment, stretch back across the entire lifespan to childhood and even to the womb. So brain health promotion and dementia risk reduction is relevant to everyone who has a brain. (View a copy of my presentation from World Alzheimer’s Day here )

National Dementia Strategy

The Following Priority Actions are to be implemented within existing resources and should be implemented in a timely fashion

• Better Understanding and Awareness
• Timely Diagnosis and Intervention
• Integrated Services, Supports and Care for People with Dementia and their Families (to include people with ID and dementia)
• Training and Education
• Research and Information System
• Leadership

Ongoing work in relation to monitoring the implementation of the National Dementia Strategy is being undertaken by the Alzheimer Society and this work will be key in informing my understanding of the NDS implementation.

A number of additional actions were identified that may require additional resources which according to the strategy will only be considered as the required resources ‘become available’. The Government must take a more proactive approach to resourcing these actions in particular by:

• Promoting awareness of the Assisted Decision-Making (Capacity) Bill to ensure that people with dementia are supported to participate in all decisions that affect them according to their will and preference
• Developing appropriate training courses for family and other informal carers
• Maximising the implementation of the national policy ‘Towards a Restraint Free Environment in Nursing Homes’
• Development and implementation of a dementia and delirium care pathway

Dementia leadership within the Department of Health would be appropriate to advance these actions.

The present structure of the HSE fails people with early onset dementia. Urgent consideration needs to be given by the Health Service Executive to create the necessary structures to overcome the current fragmentation of responsibilities between services for older adults, disability services and mental health services, and facilitate the effective development of dementia care, independent of age.

People in the general population between the ages of 30 and 64 can develop “young” or early-onset Alzheimer’s disease or dementia, but it is increasingly common in the Intellectual Disability population with 15-40% of people with Down syndrome over the age of 40 living with dementia compared with 4-8% of the general population over 65. The average age of onset of dementia for people with Down syndrome is 55 and risk increases significantly with age going from 20% at the age of 50 to 80% at the age of 65.

In December 2014 the Department of Health published Ireland’s first National Dementia Strategy (NDS). The plan was long-awaited and much welcomed by those of us working in the sphere. Given my own research in dementia prevention, my work raising awareness of brain health and dementia risk and my work addressing the stigma I particularly welcome the priority actions around improving understanding and awareness, training and education and research. I commit to monitoring the implementation of these actions, informed by ongoing work being carried out by the Alzheimer’s Society of Ireland of Ireland (ASI)

I advocate for a human rights based approach to dementia policy. People with dementia should have the same human rights as every other citizen. Unfortunately people with dementia often experience discrimination and sadly I have witnessed first hand how people living with dementia are prevented from fulfilling their rights due to cultural, social and economic barriers.

People with dementia have the right to be provided with accessible information and the support they require in order to enable them to exercise their right to participate in decisions and policies which affect them. People with dementia have the right to live as independently as possible, fully included and  free from discrimination. Importantly people with dementia should be empowered to access opportunities for education and lifelong learning.

People with dementia have the right to health and social care services provided by professionals and staff who have had appropriate training on dementia and human rights to ensure the highest quality of service.