About The Partnerships in Dementia Care Alliance

Why do research on care for persons living with Alzheimer's Disease and Related Dementias?

As the Canadian population continues to age, more and more people are being diagnosed with an illness causing dementia. Currently over half a million Canadians (i.e., 1 in 11 older adults) are living with Alzheimer’s Disease or a related dementia (ADRD). By 2014 it is estimated that 50% more Canadian families will be facing ADRD, and by 2034, over one million Canadians will have some form of dementia.

The dramatic increase in the numbers of persons with dementia is having significant implications for those diagnosed and for their family members. It will also create a range of additional challenges for care in both community and long-term care (LTC) settings due to the related communication, behavioural, and functional issues associated with dementia.

Our broader communities and the LTC system specifically face significant barriers to providing quality care and support to those experiencing dementia and are often ill-equipped to address the unique and complex chronic needs of this growing population.

Addressing stigma through inclusive decision-making

At the heart of the problem is a culture in long-term care that provides few opportunities for those directly involved in care to participate in decision-making. Current approaches to care often exclude persons with dementia from decision-making, this is often because of the misunderstanding and stigma that persons with dementia are incapable of communicating their experiences, and are unable to make meaningful contributions to their lives and the lives of others. These misconceptions contribute to the silencing and marginalization of those persons living with with dementia and limit their possibilities for dementia care.

Many have emphasized the urgent need to move away from the common top-down, provider-driven care approach to more client-driven and relationship-centred approaches.

Empowerment and enhanced care through culture change

A shift is needed to create a culture in long-term care that is built upon strong bi-directional relationships, ensuring that all key stakeholders including persons with dementia, family members, and staff are actively and meaningfully involved in planning and decision-making.

This empowering, humanistic approach to care focuses on the experiences and needs of all those involved in the care context and ensures that staff are supported and well-equipped to translate research into practice.

 

For more information on any of the PiDC Alliance initiatives, contact Sian Lockwood, Knowledge Translation Specialist.

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