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The Hub AU research: Aging Individuals with Down Syndrome and Dementia as Teachers

AU research: Aging Individuals with Down Syndrome and Dementia as Teachers

Two Athabasca University scholars have had their research into Down syndrome and dementia care published in a highly regarded clinical journal.

Lead author Dr. Annette Lane, along with co-authors Dr. Pamela Hawranik and Marlette Reed, wrote, “Aging individuals with Down Syndrome and dementia as teachers: Learnings from staff in a developmental disability program in long-term care,” which appears in Journal of Gerontological Nursing.

We discussed this accomplishment recently with Dr. Lane to learn more about this important and informative research topic.

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First off, congratulations on the article, “Aging individuals with Down Syndrome and dementia as teachers: Learnings from staff in a developmental disability program in long-term care getting published in the Journal of Gerontological Nursing!

How does this research fit into the larger body of your work?

My colleagues, Dr. Pamela Hawranik and Marlette Reed, and I are interested in researching issues that pertain to aging adults, particularly those who are vulnerable.  This research focused upon aging adults with both Down syndrome and dementia who reside in a program for those aging with a developmental disability.

These aging adults are already vulnerable due to aging with Down syndrome, but this is compounded by dementia.

Our clinical experience in long-term care with older adults who had dementia was challenging due to the manifestations of dementia. As nurses (Annette and Pamela) and a chaplain (Marlette), we used many strategies to help the older adult feel respected and maintain personal dignity.

When older adults are admitted with Down syndrome and dementia, it is difficult for healthcare professionals to develop care strategies for their clients and their family members. We wanted to try to help them through their journey and this research has provided us with a great opportunity to help staff enhance the quality of life of these older adults.

Dr. Annette Lane

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What was the biggest takeaway from this research that you want AU and the broader community to know?

There are a couple of big takeaways from this research.

First, there is a gap in the system for housing of aging individuals with Down syndrome and dementia. These individuals develop dementia much earlier than the general population, so they need skilled care by professionals who understand not just Down syndrome or dementia, but how dementia impacts those with Down syndrome.

Second, health-care professionals need more education on how to understand and work with those with Down syndrome and dementia. While these individuals may reside in a group home or in a long-term care facility, they may also receive care from physicians, nurses, and other health-care professionals within acute care, as well as clinics.

Dr. Annette Lane

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What compelled you (or inspired you) to undertake this research?

We are concerned about older adults, and in particular, those who are vulnerable. As health-care professionals, we have seen the stress family members experience when caring for an adult child with Down syndrome and dementia and the great difficulty they experience when they must admit they cannot provide the care to their aging child. This sub-population of older adults—those with Down syndrome and dementia—represents an increasing number of individuals and is a vulnerable group that needs and deserves knowledgeable care.

Dr. Annette Lane

Published:
  • March 29, 2019