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In 2015, the World Health Organization (WHO) reported approximately 47.5 million people worldwide were living with dementia, with approximately 7.7 million new diagnoses being made every year.
This progressive, degenerative and so far incurable disease is characterized by the loss of function of the neurons, with the brain becoming increasingly damaged over time. As a result, the damage typically affects the person’s ability to remember, understand, communicate and reason while struggling emotionally, socially and physically as dementia slowly robs the person of their independence (Alzheimer’s Association, 2014).
While connected to brain injury and a variety of neuropsychiatric disorders, Alzheimer’s Disease (AD) accounts for up to 60-70% of dementia cases (WHO, 2015) and typically impacts those 65 and over (Alzheimer’s Association, 2014). Research has historically focused on the experience of older individual’s and their care partners. As a result, there is a large gap in dementia research targeting those diagnosed with early onset dementia (onset before age 65) and the unique experiences of their primary care partners.
Early Onset Dementia Alberta is hoping to change that. Inspired by the all too common frustrations with the health care system and services Early Onset Dementia (EOD) patients and their family's endure; Bernie Travis founded EODA in the fall of 2011 with the help of a handful of representatives across Alberta. In the fall of 2016, Early Onset Dementia Alberta became a Foundation (EODAF).
Initially aimed at advocating for the rights and needs of EOD patients and their care partners, the foundation has expanded their focus to include driving change and destroying the stigma associated with all types of dementia, by striving to work together to build dementia awareness and education. EODAF is an Alberta based Foundation that provides support, direction, resources and assistance for persons with dementia under the age of 65, care partners and family members. EODAF hopes to inform and inspire current and future care partners, educators and people diagnosed with dementia to work together advocating for research and development of dementia care and support for this growing population.
Being a care partner for a person with chronic physical or cognitive conditions can be so overwhelming. The diagnosis of a debilitating disease or disabling health condition, impacts every aspect of the care partner and the family’s daily life. The responsibility of being a care partner can put a person at increased risk for significant health problems including depression, anxiety, high levels of stress, or burnout. Seeking help and support along the way is not a luxury for care partners; it's a necessity.
Make use of available resources to update the skills of being a care partner. There is a wealth of resources in the community, at workshops and online to help provide effective care for the care partner.