Institutionalized Women with

Dementia: Constructions of Disability,

Age, Care, and Confinement
Hailee M. Yoshizaki-Gibbons
Doctoral Candidate in Disability Studies
University of Illinois at Chicago
Introduction: Why Is This Important?
People with Dementia
In the United States, there are 5.5 million people with dementia,
and this number is expected to triple by 2050 (Alzheimers
Association, 2017).
The majority of people with dementia live in the community, but
many eventually require care in nursing homes or residential
care facilities.
Approximately 705,600 people with dementia are currently
living in nursing homes in the U.S. (Center for Disease Control
and Prevention, 2014).
Limited Understanding of Dementia
Despite this, little is known about the lived experiences of
people with dementia in institutional contexts.
Narratives about dementia often center on the perspective of
family caregivers.
If people with dementia are included, they are in the early
stages of dementia, are community dwelling, and are privileged
across axes of gender, race, class, religion, and sexual
orientation (Hulko, 2009; OConnor et al., 2010).
Care as a Gendered Experience
The majority of people with dementia are women, and the
majority of dementia caregivers are women.
This research is important because care is an experience highly
related to gender, age, and disability, but there is a dearth of
scholarship exploring how these social locations intersect for
women giving and receiving care in an institutional context.
We also need to understand how other social locations - like
race, class, immigrant status, and religion - influence the
experience of dementia and dementia care.
Centering Multiply Marginalized Women
My dissertation aims to center two multiply marginalized groups
in American society: old women with dementia living in special
care units in nursing homes, and the women who are employed
to care for them.
The purpose of my study is to explore the lived experiences of
old women with dementia and the women who care for them in
the context of institutionalization, and analyze how gender, race,
class, age, and disability intersect to influence interactive
moments, relationships, and acts of care in an institutional
context.
Research Questions: What Do I Hope
to Explore?
Research Questions
How are disability, age, gender, race, class, and immigrant status
constructed and co-constructed within dementia care in
institutional contexts?
What are the lived experiences of old women with dementia
who live in long-term care settings, and the women employed to
care for them? How do social identities influence these lived
experiences?
Research Questions
How do age, disability, gender, race, class, immigrant status, and
other social locations intersect to influence interactive moments
and relationships between old women with dementia and their
women caregivers in an institutional context?
How are discourses and cultural notions of aging, disability,
care, and confinement created in, and reinforced by, dementia
units in nursing homes?
Methodology: What Am I Going to Do?
Ethnography
Ethnography is a form of qualitative research in which
researchers immerse themselves in the day-to-day lives of
participants to study their experiences within their cultural and
social framework.
Participant Observation
Interviews
Archival Research
Participant Observation Details
Site: Lieberman
Where: Alzheimers Special Care Unit
When: 1st, 2nd, and 3rd Shifts (Overnight Component)
How Often: 2-5 Times Per Week for 6-9 Months
Ethics
Consent from legal proxies and people with dementia
Consent from staff
Interviews will be conversational
Much of the data will be collected through observation
Significance: What are the
Implications?
Significance and Implications
Better understand the experience of dementia, and how social
location (gender, race, class, age, disability) influences the
experience.
Consider policies and practices can better support women
giving and receiving care in nursing homes and other
institutional settings.
Move beyond medicalization to consider how policy changes
can shift the focus to participation, inclusion, and access within
care contexts.
Feedback
Is The Topic Significant?
Is the study needed?
Does it clearly describe benefits or outcomes that are important
to older adults?
Is it clear who will use results or make decisions & how it will
improve care?
Could more older adults benefit from the results (besides those
in the study)?
Is the Study Innovative?
What ideas or methods are novel or interesting?
Can you suggest any other outside of the box ideas for this
study?
Does the Study Raise Any Ethical Concerns?
Does the study leave out an important group? Who else should
be included?
Do you have any concerns for participants in this study? (re:
data collection, protection of privacy, risks, compensation, etc.)
Is the Study Feasible?
What might make it hard to recruit participants?
What might make it hard to get the right information from
participants?
Are the right stakeholders involved in order to effectively carry
out the study?
Are older adults/patients sufficiently engaged in shaping the
study?
Wrap Up
Wrap Up
How will I use todays feedback?
Any suggestions for sharing results with patients or the public?
(how, where, when, etc.)
Any additional comments or suggestions?
THANK YOU!!!