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Caregiver Perspectives on Cancer Screening for Persons with
Dementia: “Why Put Them Through It?”
Alexia M. Torke, MD, MS,*†‡§ Peter H. Schwartz, MD, PhD,†¶ Laura R. Holtz, BS,*‡
Kianna Montz, MA,*‡ and Greg A. Sachs, MD*†‡
OBJECTIVES: To describe the perspectives of family caregivers
toward stopping cancer screening tests for their relatives
with dementia and identify opportunities to reduce
harmful or unnecessary screening.
DESIGN: Focus group study.
SETTING: Alzheimer’s Association support groups for
family members of individuals with dementia.
PARTICIPANTS: Four focus groups including 32 caregivers
(25 female; 24 white, 7 African American, one
American/Indian; mean age 65.5, range 49–85).
MEASUREMENTS: Focus group transcripts were transcribed
and analyzed using methods of grounded theory.
RESULTS: Caregivers considered decisions to stop cancer
screening in terms of quality of life and burden on the
patient and caregiver. Many described having to intervene
in the patient’s care to stop unnecessary or harmful screening,
and others met resistance when they advocated for
stopping. Physicians varied widely in their knowledge of
dementia care and willingness to consider cessation of
screening.
CONCLUSION: Many family caregivers wish to stop cancer
screening tests as dementia progresses and are relieved
when physicians bring it up. Caregivers are open to discussions
of screening cessation that focus on quality of life,
burdens, and benefits. Interventions are needed to increase
caregiver and clinician discussion of screening cessation
and to increase clinician awareness of the need to reconsider
cancer screening in individuals with dementia. J Am
Geriatr Soc 61:1309–1314, 2013.
Key words: early detection of cancer; Alzheimer’s disease;
dementia; decision-making
As the population ages, the prevalence of Alzheimer’s
disease (AD) in the United States is expected to rise
from 5.4 million in 2012 to 6.7 million in 2025. Given
this growing prevalence, there is a pressing need to ensure
that persons with dementia receive appropriate care and
avoid unnecessary or harmful interventions.1 Because of
advanced age, individuals with dementia are often at high
risk of comorbid illness such as cancer, but screening tests
for cancer have greater risk of harm in patients with
dementia, including distress from the tests and complications
from follow-up testing and treatment.1–3 The potential
for benefit from screening is also less, given the shorter
life expectancy of many persons with dementia.4,5 Reducing
nonbeneficial cancer screening is therefore a part of
quality care for persons with dementia.
There is evidence of overscreening in this population;
18% of older women with advanced cognitive impairment
receive mammography even though their short life expectancy
makes them unlikely to benefit.6 A similar number
of persons with dementia receive colon cancer screening in
the Department of Veterans Affairs setting.7 Reducing
unnecessary tests may be difficult in light of the general
public’s positive view of cancer screening.8 Research has
found that few older adults have plans to stop screening in
the future9 and are skeptical about physician or guideline
recommendations to stop.10 A majority of older adults
believe that persons with Alzheimer’s disease or total functional
dependency should continue screening,11 and screening
rates continue to be high in individuals with other
terminal diseases such as cancer.12
As dementia progresses, caregivers must gradually take
over the process of medical decision-making. Little is
known about how dementia caregivers make decisions to
continue or stop screening, or if their perspectives on cancer
screening are as positive as previous studies have found
in other populations. To examine this, focus groups were
conducted with caregivers attending support meetings for
family members of individuals with dementia.
METHODS
Study Design and Population
A focus group study of individuals attending caregiver support
groups sponsored by the state Alzheimer’s Association
chapter was conducted. Chapters were selected to represent
a range of geographic locations and socioeconomic
status and met in a suburban church, an urban Council on
Aging office, a primary care office, and an Alzheimer’s
Association office, all located within the greater Indianapolis
metropolitan area. A staff member for each support
group was called and asked whether group participants
could be approached. Focus groups were conducted at all
four groups approached. All members of the four caregiver
support groups were eligible for participation. The method
of approach varied slightly according to group based on
the preferences of Alzheimer’s Association staff. For one
chapter site, research staff introduced the project at a
meeting and mailed a letter to those expressing interest.
For the three other sites, the support group facilitator contacted
participants to assess interest. Participants received
a $50 grocery store gift card for their participation.
Data Collection
The investigators developed the focus group interview
guide, which consisted of open-ended questions about
recent experiences with cancer screening for the person
with dementia and experiences making decisions about
screening tests (Appendix 1), based on a review of the
literature on screening decision-making.
Focus groups were conducted during regularly scheduled
meetings of the support group. At each focus group, a
member of the research staff explained the study and
obtained written informed consent from each participant. A
trained focus group facilitator and one of the physician
investigators (AMT, PS, or GS) led the groups. Focus
groups were audio-recorded and transcribed verbatim.
Analysis
Qualitative analysis of the interview transcripts were conducted
guided by methods of grounded theory,13 with
careful reading of the text to identify major themes and
build new theories based on the data. Each member of the
research team individually read and coded transcripts
using methods of open coding13 by labeling segments of
text with descriptors that identify an important concept in
the participants’ responses.13,14 Investigators met weekly
to refine the list of codes and to organize codes into
broader themes that emerged from the data. Disagreements
were resolved according to consensus. At each team meeting,
whether theme saturation, the point at which no new
themes are identified in subsequent data collection, had
been reached was discussed.13 Transcribed interviews and
codes were entered into NVivo 10 software (QSR International,
Burlington, MA) to allow for sorting of the coded
segments of text.
Several strategies were used to ensure trustworthiness
of data analysis, including the use of more than one focus
group coleader; independent reading of the transcripts by
each investigator; and a team with varied backgrounds,
including a geriatrician (GAS), two primary care physicians
(PS and AMT), and nonphysician team members
with backgrounds in education (KM) and healthcare
compliance (LH).
RESULTS
Four focus group sessions were conducted with a total of
32 caregivers. Attendance at each focus group ranged from
seven to 10. Mean participant age was 65.5 (range 49–
85). Fourteen caregivers were daughters, 13 were spouses,
and five were other (Table 1). Each focus group included a
mix of spouses and adult children and included men and
women. The primary themes that emerged from the data
were: quality not quantity of life, increasing burdens on
the patient and caregiver, intervening to stop screening,
and variability of physician expertise (Table 2).
Quality Not Quantity of Life
Many caregivers perceived that forgoing the proposed
screening test was the best way to preserve quality of life
(Table 2, Quotations 1–3). Some perceived a direct tradeoff
between quality and duration of life. One caregiver’s
reasoning was based on her perceptions about what she
would want if she were in similar circumstances (Quotation
2). Another questioned the appropriateness of screening
an individual who was unable to make an informed
choice (Quotation 3).
Increasing Burdens on Patient and Caregiver
Caregivers noted the particular burdens that dementia
created for individuals undergoing screening tests. For
Table 1. Participant Demographic Characteristics
(N = 32)
Characteristic Value
Caregiver
Age, mean (range) 65.5 (49–85)
Female, n (%) 25 (78)
Race, n (%)
African American 7 (22)
White 24 (75)
American Indian 1 (3)
Education, years, mean 13.9
Relationship to patient, n (%)
Spouse 13 (41)
Daughter 14 (44)
Son 1 (3)
Daughter-in-law 2 (6)
Son-in-law 2 (6)
Patient
Age, mean 81.5
Female, n (%) 21 (66)
Education, years, mean 12.8
example, they reported that agitation and inability to
understand the procedures increased as dementia worsened
(Quotation 4). Caregivers’ understanding of the burden of
tests came from their experiences watching the person with
dementia undergo them and from their own personal experiences
with tests such as colonoscopies and mammograms.
Caregivers also described the cascade of tests and
treatments that may result from a positive test. Logistical
challenges such as the need for greater supervision were
barriers to obtaining screening tests. Several quotations
highlighted the importance of the shared experience of the
patient and caregiver (Quotations 6 and 7) and considered
the effect of the screening test on the caregiver’s quality of
life. Many caregivers described the distress they experienced
in providing care to the person with dementia and
managing agitation, poor understanding, and complications
Table 2. Themes and Quotations
Theme
Quotation
Number Representative Quotation
Quality not quantity of life 1 I was concerned about her quality of life and making sure that she was very, very comfortable, and
I think that means more than putting people through a lot of unnecessary, uncomfortable…
procedures.… It’s not going to make the person better. It might make them linger on, but are you
really living?
2 If a person is going to be miserable for 3 years or well or feeling better for 2 and they are 85,
90 years old, I think I would go for the shorter term of life. I hope somebody would for me…And
I’d rather have a good quality of life for 2 years than a bad 1 for 4.
3 If you can imagine that you’re telling somebody it’s time to go do this and they’re putting things in
their veins and they have to sit there and they feel sick afterwards, I believe at a certain point, it’s a
form of torture if the person really hasn’t chosen it for themselves, and you are not significantly
going to extend their life of any quality.
Increasing burden on patient
and caregiver
4 She absolutely would fight it tooth and nail because not really understanding exactly and also the
older she gets, it seems like the more she responds to any kind of discomfort. Getting her shots
now are a problem. Getting blood from her is now a problem. There would be no way we could do
a mammogram.
5 We were going to have my mother go through a mammogram and… I decided not to…I asked the
doctor, OK, if you find something, what would be the procedure? What would you do? And he said,
well, it would be the normal progression of… going through surgery. I just looked at him and said,
do you think my mother could survive surgery, and, he said no. And that was my decision right
there.
6 [A]t the point where my mother is, right now, there’s no way in the world I could get her to drink
all that stuff and not eat. I’m thinking who’s going to monitor all 24 hours a day? I can’t do it. I
can’t do it. It’s utterly impossible. So I can’t send her through that, and I can’t go through it.
7 Is it really going to change anything, and if it’s not, then why put them through it, and not only
why put them through it, why put ourselves through it as the primary caregiver?
Intervening to stop
screening
8 I’m in charge of my father’s medical care and treatment now, but I wasn’t when he had his last
colonoscopy…it was that experience that made me pursue that I have to take over because he was
sent a letter from the place where he had the colonoscopy before, saying that it’s time to come in,
and he and my stepmother just said, well the doctor says it’s time to go again.…When she got him
home, he could barely get up to their apartment and I thought, this can’t happen again.
9 And it’s just usual with her physical, they go down the chart, they see which tests have been done
and the last time they were done. And…one doctor suggested, maybe it’s time for her to have
another one. Well, when I questioned it, he agreed with me that it wasn’t necessary for the
colonoscopy again.
10 Now I firmly believe that part of the problem is that our society in the medical profession is always
saying, do this, do this, this is the next thing you can do, and we really have to kind of pull back
from that and say, what’s the quality of this person’s life and the dignity.
11 My mom hasn’t had one in eons, but her doctor asked her to have one earlier this year and she
said OK. And I said OK on that, so I went with her to the appointment and she came through
unscathed … but I asked her, I said, she’s 88. Why are you ordering this now? Tell me what’s the
point? He said it’s just been a long time. Let’s do it once just to make sure that she gets a clean
bill of health. I said OK with respect.
Variability of physician
expertise
12 I don’t know whether at this point I should change primary care physicians… but she clearly
doesn’t know about Alzheimer’s and she is clearly not very helpful…they unfortunately aren’t all
very well informed about Alzheimer’s.
13 We had a wonderful experience with our primary care physician…She said, Alice, you’re 85. You
don’t have to do anything if you don’t want to, but here’s what I would do if I were you…And it
was such a relief to know that I wasn’t … I wasn’t subjecting her to anything she didn’t want and I
wasn’t going against medical wisdom either.
14 With H’s doctor…a lot of the time she sits with her head down like this and you can’t really do eye
contact. But what he does is, I sit right next to her, even though he’s talking to me, he looks over
at her and has her hand in his hand all the time. She loves that contact, and he got it early.
example, they reported that agitation and inability to
understand the procedures increased as dementia worsened
(Quotation 4). Caregivers’ understanding of the burden of
tests came from their experiences watching the person with
dementia undergo them and from their own personal experiences
with tests such as colonoscopies and mammograms.
Caregivers also described the cascade of tests and
treatments that may result from a positive test. Logistical
challenges such as the need for greater supervision were
barriers to obtaining screening tests. Several quotations
highlighted the importance of the shared experience of the
patient and caregiver (Quotations 6 and 7) and considered
the effect of the screening test on the caregiver’s quality of
life. Many caregivers described the distress they experienced
in providing care to the person with dementia and
managing agitation, poor understanding, and complications
of procedures. Screening tests such as colonoscopies often
required additional supervision or support from caregivers,
and this, in turn, caused particular burdens for the caregiver
and the person with dementia (Quotation 6).
Although respondents focused primarily on how dementia
affected the burdens of screening tests, caregivers also
mentioned age, overall health, and comorbidities of the
person with dementia as factors in the balance of burdens
and benefits.
Intervening to Stop Screening
Several caregivers described instances in which they intervened
to prevent a scheduled or recommended screening test.
One described how she was becoming far more involved in
decision-making for a relative with dementia as a result of a
bad experience with a screening test (Quotation 8). Others
reported that screening tests were often conducted after
receipt of a form letter or reminder that it was time for the
test. Caregivers described the need to intervene in light of the
momentum of the healthcare system toward continued intervention.
Caregivers described their role in advocating for the
patient’s interests within the healthcare system. Advocating
for a change in momentum proved difficult for some caregivers.
For example, one described eventually going along with
a recommendation for a mammogram despite expressing
reservations to the physician (Quotation 11).
Variability of Physician Expertise
Caregivers spontaneously described their perceptions about
physicians’ knowledge and expertise in caring for persons
with dementia. They reported a wide variety of experiences
with respect to expertise in caring for older adults and persons
with dementia that affected decisions about interventions.
Caregivers appreciated physicians’ willingness to take
dementia and age into account in cancer screening decisions
(Quotation 13) and appreciated physicians who continued
to include the patient in conversation, even if the patient
could not fully participate (Quotation 14).
DISCUSSION
This focus group study of 32 dementia caregivers found
that many people make decisions about cancer screening
based on quality of life and that many had experiences of
stopping or wishing to stop cancer screening in the setting
of dementia. Caregivers pointed to the increasing burdens
of screening that are often a direct result of the cognitive
or behavioral symptoms of dementia, such as not understanding
the purpose of the test or becoming agitated in
new or uncomfortable situations. In addition, participants
questioned the expertise of doctors who forged ahead with
screening without reflecting on the overall goals, and some
described intervening to stop a test being performed. Caregivers
also welcomed provider-initiated discussions about
stopping screening tests.
These findings are in marked contrast to those of studies
that have asked individuals to consider their own preferences
for future cancer screening. More than 90% of the
older adults in a national telephone survey planned to
continue screening regardless of health status or age.9 In
another study, approximately one-third of a national
telephone sample thought the decision of an 80-year-old to
stop screening was irresponsible.8 In interviews with older
adults at a senior health center, it was found that many
expressed a sense of moral obligation to continue screening
and thought that a physicians’ recommendation to stop
might threaten trust in that physician or call the physician’s
judgment into question.10 In contrast, the current
study found that caregivers considered stopping screening
tests on their own or over the objections of clinicians and
appreciated physicians’ willingness to consider stopping
screening as dementia worsened.
It may be that this difference in perspective is largely
due to the caregivers’ experience with the person with
dementia. Caregivers gain knowledge about the daily
burdens of dementia and the additional challenges that
screening tests impose, including trips to the office or clinic
and the pain and discomfort of the test. These caregiver
experiences are likely to be different from those of older
adults hypothetically considering their own future.
Caregivers were also critical of providers who did not
take burdens into account when recommending “standard”
screening, and some described situations in which they had
to intervene actively to stop screening tests. As previously
noted, they described a sense of momentum toward continued
screening,8,15 due in part to current cancer screening
guidelines, which offer conflicting guidance about age
cutoffs16 and provide little guidance about when factors
such as comorbid illness should weigh against screening.
In some cases, caregivers described themselves in the role
of advocate for the patient in a healthcare system that was
not responsive to the needs of the person with dementia.
These findings suggest that there may be an opportunity
to reduce the overuse of screening in those with
dementia by helping caregivers engage in productive
conversations with providers. A major initiative by the
American Board of Internal Medicine Foundation Choosing
Wisely campaign17 encourages providers and patients to
question medical interventions that may be costly but not
beneficial. The findings of the current study showed that at
least some caregivers have concerns about nonindicated
screening tests but that their questions were sometimes
dismissed or that they failed to stop the momentum toward
such screening, suggesting that it may be important for
future initiatives aimed at decreasing overuse of screening
to target providers, who can be taught to validate concerns
of the caregiver and facilitate productive dialogue about
cessation of screening tests. Provider discussions can be
based on an individualized approach to decision-making
that considers life expectancy, benefits, burdens, and
values.16
The current study also found that caregivers considered
screening decisions in terms of the benefits and
burdens for the patient. Although ethical frameworks for
surrogate decision-making focus on patient preferences for
care,18,19 it was found that caregivers rarely spoke of the
patients’ current or prior preferences. Although great
attention has been paid to advance care planning for
end-of-life decisions, it may be that few individuals have
considered other future healthcare choices, such as when
to stop screening. Caregivers probably had little information
regarding the patient’s own preferences for future
screening care, and any such preferences may have been
uninformed by the reality of life with dementia and the
burdens of screening in that setting. Instead, caregivers
relied heavily on their perception of the patient’s quality of
life and the burdens and benefits of the test, both examples
of best interest judgments.
Caregivers also considered the burdens of the tests on
themselves. The extent of caregiver burden has been well
documented for persons with dementia.20,21 The results of
the current study suggest that medical encounters are a
source of burden that caregivers consider in their decisionmaking
process. Taking a person with dementia to the
doctor, encountering resistance, and even watching the person
suffer are sources of distress to the caregiver. Caregivers
viewed their own interests and those of the person with
dementia as being closely interwoven if not inseparable, such
that things that are burdensome for the person with dementia
are also burdensome for the caregiver. Standard ethical
models for surrogate decision-making do not account for
burdens of an intervention to the family or other individuals,
although there is evidence that physicians consider these
factors in surrogate decision-making for adults.22
Limitations of the study include that caregivers were
all participants in Alzheimer’s Association support groups
and may differ from caregivers generally. For example,
they may have been more activated and willing to advocate
on behalf of their relative. All caregivers resided in a
single, Midwestern metropolitan area and may have
differed in terms of social and religious views from caregivers
elsewhere. The caregiver group included whites and
African Americans but did not include Asian or Hispanic
individuals. Finally, a small qualitative study cannot identify
the prevalence of each theme but rather characterizes
a framework for thinking about cancer screening in
dementia that can be validated in future research.
In conclusion, not only are caregivers of persons with
dementia willing to consider stopping cancer screening,
but many are also relieved when physicians bring it up.
Caregivers would be most open to discussions of screening
cessation when they focused on quality of life and burdens
and benefits for the person with dementia. Given the openness
of dementia caregivers to considering screening cessation,
interventions could target clinicians to increase the
frequency of such discussions or could target caregivers to
empower them to advocate for screening cessation as
dementia progresses and the burdens of screening tests
outweigh the benefits. Reducing unnecessary screening has
the potential to reduce patient burden, costs, and caregiver
distress while improving the overall quality of care for
individuals with dementia.
ACKNOWLEDGMENTS
We would like to acknowledge Stephanie Munger for serving
as a focus group facilitator.
Conflict of Interest: Supported by Award
P30AG024967 from the National Institute on Aging (NIA)
to the Indiana University Roybal Center. The content is
solely the responsibility of the authors and does not necessarily
represent the official views of the NIA or the
National Institutes of Health. The investigators retained full
independence in the conduct of this research. Dr. Torke was
supported by career development award K23AG031323
from the NIA.
Dr. Sachs serves as a consultant to the National Pharmacy
and Therapeutics Committee of CVS Caremark and
receives an honorarium for this role.
Author Contributions: Concept and design: Torke,
Schwartz, Sachs. Acquisition of subjects and/or data:
Torke, Schwartz, Holtz, Montz, Sachs. Analysis and interpretation
of data: Torke, Schwartz, Holtz, Montz, Sachs.
Preparation of manuscript: Torke, Schwartz, Holtz,
Montz, Sachs.
Sponsor’s Role: The funding organization did not play
a role in design and conduct of the study; collection, management,
analysis, and interpretation of the data; and
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