Mother-Adult Daughter
Relationships Within
Dementia Care
Journal of Family Nursing
Volume 13 Number 1
February 2007 13-32
© 2007 Sage Publications
10.1177/1074840706297424
http://jfn.sagepub.com
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http://online.sagepub.com
A Critical Analysis
Catherine Ward-Griffin, RN, PhD
Abram Oudshoorn, RN, BScN
Kristie Clark, RN, MScN(c)
Nancy Bol, RN, MScN
University of Western Ontario, London
Evidence suggests that intergenerational caregiving between mothers and
daughters will become increasingly common, and yet, we know very little
about the specific relationships between adult daughters and their mothers
with dementia. Guided by socialist-feminist theory and a life-course perspective, 15 mother-adult daughter dyads participated in two individual,
semistructured interviews. Data analysis revealed four dynamic types of
mother-daughter relationships: custodial, combative, cooperative, and cohesive. Custodial and cooperative relationships mainly focused on the provision
of and receipt of tasks, whereas combative and cohesive are emotion focused.
At the same time, custodial and combative relationships are based on deficits
compared with strength based cohesive and cooperative relationships. In
addition, certain contextual factors, such as expectations of care and levels
of support, shaped the development of these relationships. Moreover, study
findings highlight a number of implications for practice, policy, and research
necessary to support individuals with dementia and their families.
Keywords: aging; dementia care; mother-daughter relationships; health
promotion
Background and Significance
Caregiving is relational and cannot be separated from people’s experiences of each other in the past, present, or even the anticipated future (Poirier
& Ayres, 2002). Moreover, family caregiving takes place within a historical
context because bonds of affection and reciprocity that sustain caregiving
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Journal of Family Nursing
are rooted in past relationships (Pallett, 1990). Many argue that the motherdaughter bond is central to the lives of women (Abel, 1991; Allen & Walker,
1992). Given the longer life span of women and the gendered role expectations
of women to assume the role of primary caregivers for family and friends
(Armstrong & Armstrong, 2004), intergenerational caregiving between mothers and daughters will become increasingly common. An only daughter, an
unmarried daughter, daughters who are unemployed, and daughters who live in
close proximity are more likely to become caregivers for aging parents
(Fingerman, 2001). Furthermore, many aging mothers who are widowed usually receive help from their adult daughters (Armstrong & Armstrong, 2004).
As Canada’s elder population grows, an increasing number of individuals
will require care for Alzheimer’s disease (AD). The prevalence of AD in
Canada is expected to increase from approximately 364,000 persons in 2000
to more than 750,000 persons by 2030, with approximately half of the individuals living in the community (Canadian Study of Health and Aging
Working Group, 1994). Moreover, most studies have shown that the prevalence of AD is higher in women (Evans, Ganguli, Harris, Kawas, & Larson,
1999). At the same time, recent changes in patterns of care provision, including health care restructuring, the closure of long-term care facilities, and
underfunding of home care (Chappell, 1999; Strang & Koop, 2003), have led
to an increasing reliance on daughters to provide care for their aged mothers.
To identify and implement appropriate programs and policies that promote
the health and well-being of both caregivers and care recipients, we need to
broaden our understanding of the relationships between community-dwelling
mothers and their adult daughters within the context of dementia care.
Literature Review
Although the caregiving literature is extensive, research has tended to
segment the life course, with caregivers receiving more attention than care
recipients (Aronson, 1991). A number of studies have examined how
Authors’ Note: This research was funded by the Alzheimer Society of London and Middlesex
(Marion and Chester Fish Research Award). The authors also wish to acknowledge the women
who participated in the study. Their willingness to share their personal experiences of receiving
and providing dementia care was critical for the success of the research. Please address all
correspondence to Catherine Ward-Griffin, RN, PhD, Associate Professor/Scientist, University
of Western Ontario, Lawson Health Research Institute, London, Ontario, Canada N6A 5C1;
e-mail: [email protected].
Ward-Griffin et al. / Dementia Care
15
daughters interact with and provide care to their mothers with dementia (de
la Cuesta & Sandelowski, 2005; Perry, 2004; Stephens, Townsend, Maritre,
& Druley, 2001; Teal & Carson, 2003; Ward-Griffin & Bol, in press). In
particular, two investigations focused specifically on daughters as caregivers within dementia care. Ward-Griffin and Bol (in press) found that
daughters used negotiating strategies such as “finding a balance” and “leading the way” in their attempts to maintain a reciprocal relationship with
their mothers with AD. In another qualitative study, 19 in-depth interviews
revealed that daughters deconstructed their relationships with their mothers
and then rebuilt new understandings (Perry, 2004). Furthermore, these
daughters engaged in a number of strategies such as “putting themselves in
their mothers’ shoes” and devising ways of protecting themselves from the
hurt inflicted by their mothers as a consequence of the disease. Although
the effects of the quality of this dyadic relationship on the well-being of the
caregiver have been documented, a gap remains in the literature concerning
the effect of such relationships on the health and well-being of the person
with dementia.
Although most dementia caregiving research has relied solely on the
perspective of the caregiver, in recent years, there has been an urgent plea
to examine the care process from a more holistic perspective, one that
includes the perspectives of both caregiver and care recipient (Allen &
Walker, 1992; Cox & Dooley, 1996; Gilmour & Huntington, 2005; WardGriffin, Bol, & Oudshoorn, 2006). Furthermore, some researchers have
begun to move away from a focus on tasks and outcomes of caregiving to
include relational aspects of dementia care (Globerman, 1994; Lewis,
Hepburn, Narayan, & Kirk, 2005; Perry, 2004; Ward-Griffin & Bol, in
press). Analysis of in-depth interviews with a diverse sample of 10 older
community-dwelling women with mild to moderate cognitive impairment
revealed mostly positive relationships with their daughters (Ward-Griffin
et al., 2006). Similar to previous research on older mothers and daughters
engaged in care relationships (Allen & Walker, 1992; Aronson, 1991), all
participants spoke of feeling grateful for the care received, but at the same
time, they felt guilty for being a burden to their daughters. In another qualitative study of five men and four women with dementia, Gilmour and
Huntington (2005) found a need to maintain self-control and independence
with the increasing need for support in everyday tasks.
A few studies have sought both caregiver and care-recipient perceptions of
their care experience. In a study of 48 caregiving mother-daughter dyads
(without dementia), it was found that the more peer-like the mother-daughter
relationship at the time of the caregiving experience, the less stress that the
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Journal of Family Nursing
adult daughter experiences as a caregiver (Walter, 1991). Pohl, Boyd, and
Given (1997) studied mother-daughter relationships through the 1st year of
caregiving (without dementia) and found that for many daughters, caregiving
was a somewhat fixed extension of their lifelong relationships, but for others,
caregiving provided an opportunity to develop closer mother-daughter ties.
Although both spouses and daughters expressed relational loss in a study
comparing perceptions of dementia caregiving (Narayan, Hepburn, & Lewis,
2004), only daughters reported an improved relationship with the care recipient after the onset of dementia. Unlike spouses, daughters in this study experienced negative effects on their health, family life, and work life. Other
investigations have also found that the quality of interactions between persons with dementia and their family members prior to the onset of dementia
is an important factor for predicting emotional strain, quality of life, and caregiving satisfaction (Lewis et al., 2005; Mui, 1995; Spaid & Barusch, 1994).
For instance, Lewis et al. (2005) conducted a study of 132 spousal caregivers
of community-dwelling persons with dementia and found three different
types of spouses: relational, instrumental, and reactive. Relational spouses
focused on the spousal bond, whereas instrumental spouses emphasized the
extra work associated with caregiving, and reactive spouses spoke of how the
relationship has changed (and/or been lost) due to the disease. Lewis et al.
found that relational spouses scored significantly lower than instrumental and
reactive spouses on a caregiver distress measure.
In summary, it is important that in future studies, the life course should
not be segmented, as this can lead to divisive conceptualizations of care and
service provision between and among those receiving care and those giving
it. Furthermore, the tendency to focus on static life stages reflects a failure
to capture the continuity of gender identity and experience over the life
course, for women in particular (Aronson, 1991). Despite increasing interest in the experiences of both the caregiver and the care recipient, there is
limited knowledge about the ways in which mothers and daughters negotiate their relationships within the context of dementia care. Specifically, we
lack information on the factors that shape those relationships, and the
health effects of these relationships within the context of dementia care.
Purpose
To address the resulting lack of knowledge on which to base practice and
policy, the purpose of this interpretive descriptive study was to develop a
better understanding of the caregiving and care-receiving experiences of adult
Ward-Griffin et al. / Dementia Care
17
daughters and their mothers with mild to moderate cognitive impairment.
Specifically, we were interested in the following questions: (a) How do
daughters/mothers describe their relationships with one another within
dementia care? (b) What contextual factors shape these relationships? and (c)
What are the health experiences of mothers and daughters in dementia care?
Method
Evidence suggests that the caregiving experience differs by gender, by the
relationship of the family member to the care recipient, and by the health
status of the care recipient (Dupuis & Norris, 2001). Therefore, guided by
feminist (Stoller, 1993; Ungerson, 1990) and life-course (Fingerman, 2001)
perspectives, this qualitative study focused exclusively on adult daughters
caring for mothers with mild to moderate cognitive impairment. This type of
inquiry focuses on individual subjective perceptions of women’s care experiences, while at the same time attending to the fluctuating nature of the
mother-daughter relationship over time. As previously mentioned, the caregiving literature tends to portray elderly mothers as burdensome to their overworked daughters. Feminist inquiry suggests an alternative view—that caring
is an intergenerational process between two women. Feminist scholars have
suggested that the bond between mothers and daughters, in particular as they
age, demands more empirical attention. The goal of feminist research is to
develop knowledge, thereby creating positive changes with the aim of
improving the lives of women in this intergenerational relationship.
Similarly, a life-course perspective attempts to illuminate the social
interactions between mothers and adult daughters throughout their lives.
This perspective assumes that the meaning of care (both giving and receiving) is based on a lifetime of experiences rather than on a single event or
situation (i.e., dementia; Fingerman, 2001). Because so little is known
about the experiences of mothers and adult daughters within dementia care
and it is a clinical phenomenon of interest to nursing, an exploratory qualitative approach was chosen. This interpretive descriptive approach is an
appropriate method given the objective of trying to understand the themes
and patterns of a particular phenomenon (Lofland & Lofland, 1995; Morse,
1994) and to generate an interpretive description capable of informing clinical understanding (Thorne, Kirkham, & O’Flynn-Magee, 2004). Thus, this
reflective, critical inquiry will ultimately guide and advance nursing knowledge of mother-daughter relationships in the dementia care process.
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Recruitment and Sample
After gaining approval from the Ethics Review Board of the affiliated
university, multiple recruitment strategies (e.g., key community agencies,
doctors’ offices, community centers, word of mouth) were used to obtain a
diverse sample of 10 community-dwelling mothers with mild to moderate
cognitive impairment and their 15 caregiving daughters. Some daughter
participants indicated that their sister(s) would be interested in taking part
in the study. Therefore, some mothers (n = 3) had 2 or more daughters participating in the study. Obtaining multiple daughters within the same family was not intentional, but it provided an opportunity to compare different
mother-daughter relationships in the same family unit.
The ages of the mothers ranged from 75 to 98 years (mean age = 84.6
years). Mother participants who obtained a standardized mini-mental state
examination (SMMSE) score of 17 or higher were invited to participate in
the study. According to Molloy and Clarnette (1999), an SMMSE score
between 21 and 24 is indicative of early dementia and a score between 10
and 20 is indicative of moderate dementia. Based on the previous clinical
experience of one of the investigators, the cutoff score was set at 17 to
ensure accurate, reliable interview data. SMMSE scores of the mother participants ranged from 18 to 28 (mean score = 22/30). At the time of the first
set of interviews, four of the mothers lived in their own homes, four mothers lived in their daughters’ homes, and two of the mothers resided in retirement homes. The majority of mothers were widowed (78%), Canadian
(55%), and received an income of less than $20,000 (71%).
The mean age for the daughters was 49.6 years, ranging from 35 to 63
years of age. The majority of daughters were married (64%), had at least a
postsecondary education (50%), and were employed either full-time (50%) or
part-time (14%) in various sectors, such as education, business, or retail.
When asked to which cultural group they identify with most closely, most
(52%) responded “Canadian.” The average household income was evenly distributed among the participants who completed this demographic question:
$0 to $19,999 (8% of daughters); $20,000 to $39,999 (23% of daughters);
$40,000 to $59,999 (39% of daughters); $60,000 to $79,000 (23% of
daughters); and more than $80,000 (8% of daughters). Daughters reported
that they had been providing daily to weekly assistance for the mothers for an
average of 49 months, ranging from 11 to 72 months. All daughters, with one
exception, lived in the same city as their mothers. On average, the daughters
provided regular assistance to their mothers (3 days per week).
Ward-Griffin et al. / Dementia Care
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Data Collection
The major data sources used in this study were in-depth interviews and
the corresponding field notes of each interview. If both mother and
daughter agreed to participate in the study, separate in-depth interviews
were scheduled at a mutually convenient time and place. All participants
were asked to take part in two audiotaped interviews (lasting approximately
1 hour) at intervals of approximately 6 to 9 months. Because we were interested in understanding how the progress of dementia shapes the motherdaughter relationship, we selected an intermediate time frame, one that
would potentially capture this aspect of the relationship without risking participant attrition of the mothers. However, two mothers were not able to
participate in the second interviews due to SMMSE scores lower than 17.
Thus, a total of 15 mother-daughter dyads were interviewed initially, and
13 mother-daughter dyads were interviewed a second time. Written consent
was obtained immediately prior to the initial interview, and ongoing assent
was secured at the beginning of the second interview.
Using an in-depth focused interviewing approach (Merton, Fiske, &
Kendall, 1990) informed by the work of feminist researchers (Reinharz,
1992; Ungerson, 1990), the participants were asked nondirective questions
designed to trigger dialogue about their experiences in providing/receiving
care, the mother-daughter relationship, and the factors influencing the
process of care. This approach encouraged participants to discuss what they
thought were the most important aspects of the care process. The decision to
conduct individual interviews rather than conjoint mother-daughter interviews was primarily based on the belief that participants may be more forthcoming in their accounts of the care process if interviewed alone. However,
on two occasions, mothers invited their daughters to join them for their interviews, which provided the opportunity to collect observational data with
respect to mother-daughter interactions. Although an hour was usually adequate for the three mothers to describe their relationships with each of their
daughters, one mother was interviewed twice because she needed extra time
to fully discuss her relationships with her four daughters. All participants also
completed a brief demographic questionnaire at the end of the interview.
Data Analysis
The major procedures for qualitative data analysis followed the guidelines
of Lofland and Lofland (1995). After each interview, full field notes were
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written to record perceptions, insights, and observations (Morse & Field,
1995) of the mother-daughter relationship. Interview data from the mothers
who had more than one daughter participating in the study were analyzed in
the same manner as the other interview transcripts; however, these interviews
and field notes illuminated the uniqueness of multiple mother-daughter relationships within the same family unit, as well as the influence of sibling relationships within dementia care. Preliminary analysis focused on addressing
key defining characteristics (e.g., conflict, negotiation), contextual factors
(e.g., familial care expectations, sibling supports), and health experiences of
the mothers and daughters (e.g., gratification, alienation) that emerged within
the data. Using NUD*IST, a qualitative software program, to facilitate this
analysis (Richards & Richards, 1994), researchers independently and collectively contributed to the development of the typology of mother-daughter
relationships within the context of dementia care. Ultimately, the principal
investigator prepared a schematic typology of four unique mother-daughter
relationships (see Figure 1), which was finalized through team analysis.
Demographic data were analyzed using descriptive statistics.
Guba and Lincoln’s (1989) criteria for establishing credibility were used
throughout data analysis. Credibility was established through prolonged
engagement with the data, audiotaping and verbatim transcription of all
interviews, member checking (sharing preliminary findings with the participants), peer debriefing, and the use of multiple sources of data (interview
and observation).
Findings
Through the analytic process, there were two major, dialectical dimensions
of the mother-daughter relationship: (a) task focused–emotion focused, and
(b) deficit based–strength based. Thus, a typology depicting four unique
types of mother-daughter relationships associated with each of these two
dimensions of the care process of dementia emerged: custodial, cooperative,
combative, and cohesive. It is important, however, to remember that these are
prototypes; in reality, the dyads often engaged in more than one type of relationship. The following section will describe each of these mother-daughter
relationships and how certain contextual factors within dementia care, such
as expectations of care and levels of support, shaped the development of these
relationships. All names used below are pseudonyms.
Ward-Griffin et al. / Dementia Care
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Figure 1
Mother-Daughter Relationships Within Dementia Care
Task Focused
Custodial
Cooperative
Deficit
Based
Strength
Based
Combative
Cohesive
Emotion Focused
Custodial
In custodial mother-daughter relationships, the defining characteristic is
“duty,” where both the mother and daughter report that familial caregiving
expectations were the main motivator and reason for their interactions. With
a focus on the mother’s health-related deficits or disabilities, including cognitive impairment, daughters provide the minimal amount of care deemed
necessary for their mothers’ survival. Furthermore, like other types of custodial relationships, the daughter within this relationship is clearly in charge
of identifying her mother’s physical needs and providing task focused care
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accordingly. Sarah, who provides the bulk of assistance to her mother,
explains,
I usually take care of what needs to be done . . . it’s just to make sure she’s
eating and getting her medicine, but other than that. . . . To sit and talk, like
there’s no conversation . . . we really don’t have a social relationship. . . . I
don’t want to do it. It’s not that I don’t want any contact with her, I’m just
tired of being the babysitter. . . . It feels like a chore sometimes and I feel bad
about that because it shouldn’t, but I just figured it’s my mom, and so someone’s got to look after her.
Although both the mother and the daughter have fairly high expectations
of the delivery of task focused care, it is accompanied by a low expectation
of emotional support. There is a notable absence of emotional attachment
within the custodial mother-daughter relationship. In fact, a lack of intimacy has been a common theme expressed throughout the lives of these
dyads. Sarah’s mother, Anne, describes how she relies on her daughters for
assistance:
It’s difficult for me to get close to either one of them. . . . I wouldn’t phone to
chat with Sarah. But when it comes to having a problem, or there’s some,
something that’s come up, if it needs somebody that has a, a business mind,
or is, is accustomed to thinking things through and coming to a decision, I’ll
go to Sarah.
The main health experience for mothers and daughters of a task focused,
deficit based custodial relationship is objectification of the mother, leading
to potential caregiver and/or care-recipient burden, in particular, as the disease progresses over time. In the situation described above, both Sarah and
Anne reported increasing interpersonal conflict and emotional distress at
the second set of interviews. Sarah’s limited physical, financial, and social
support systems were almost depleted. Theoretically, a custodial motherdaughter relationship could possibly slip into the second type discussed
below, a combative mother-daughter relationship.
Combative
Similar to the custodial relationship, the combative mother-daughter relationship exists primarily to address the cognitive deficiencies of the mother.
However, the distinctive feature of this emotionally charged relationship is one
Ward-Griffin et al. / Dementia Care
23
of “power over,” where both the mother and daughter compete for control or
authority over the dementia care process. Moreover, this conflict has usually
been a dominant force throughout their lives:
She is a very difficult person to be around. Even when I was a little girl, I
knew that I never wanted to be like my mother. And I grew up knowing that
I never wanted to be like her. And I told my kids, if I ever get like grandma,
just shoot me! (Tara, daughter)
And she [Tara] is a strong person herself. If I kind of veer away from something, she is going to be right there to push me back. And that is fine, I need
that. (Helen, mother)
However, with the onset and progression of dementia, the perceptions of
both mothers and daughters of their interactions are shaped by their previous contentious mother-daughter relationship. In spite of understanding the
symptoms of dementia, Linda describes how her mother [Mary] continues
to lie to her:
I can remember being so angry with her. It was almost like she was picking
a fight. . . . I was at her place and she had a frozen pizza in the oven. And she
took it out a few minutes later and flipped it, and put it back in the oven. I
was upset. And then she said, “What? It says here right on the package that
you should flip it after 10 minutes or whatever.” And so it was another thing
that seemed like a lie. And she was all upset and irate like it was, you know,
I shouldn’t talk to her like that, and that she did nothing wrong . . . yeah, the
conflict, and the fighting, arguing, the deceit and lying—that’s the way our
relationship has been.
Although dementia dramatically alters the power relations in all types of
mother-daughter relationships, the daughter in a combative relationship
tends to be more aggressive in controlling her mother’s behaviors and activities of daily living, whereas the mother tends to resist her daughter’s control. For instance,
My sister gave her [mother] a cigarette and I didn’t see it at first. I said, “You
are not having a cigarette!” I grabbed it out of her hand. Like I was literally
jumping over the table and grabbing the cigarette. It was almost like taking
something away from a baby. I said, “You are not having that!” (Linda)
As the daughter assumes more of the care of her mother, the tension that
exists between the mother and daughter escalates, which may lead to further
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Journal of Family Nursing
alienation of the mother. Mary, who lives on her own in a small apartment,
explains,
I don’t have a close relationship with Linda as I, I have talked to her a few
times recently, but I don’t bother her, I never call her. If she comes, she
comes; if she doesn’t, she doesn’t.
Increasing hostility between the mother and daughter, coupled with high
caregiving demands and limited formal and informal supports, may also
lead to elder neglect and/or abuse. Tara describes her deteriorating situation
with her mother:
She is very, very needy. Sometimes I just have to tolerate her but I can’t be
around her for long. She is so needy! You feel like there is nothing, there is
nothing left for you because you give, give, give so much to her. . . . There
are no rewards in this relationship at all and over the couple of years that
she’s been here, I find myself so stressed and so upset and in tears and I
would just say to my husband, “I just wish she was dead.”
Cooperative
In direct contrast to the custodial and combative relationships, the cooperative mother-daughter relationship is strength based. Rather than focusing on the cognitive deficiencies of the mother, the caregiver burden of the
daughter, or the relational difficulties between the mother and daughter, a
defining characteristic of this mother-daughter relationship is reciprocity.
I notice that our relationship is very, very comfortable. Very relaxed, very,
you know, mom and I are just totally in sync with one another. (Julie,
daughter)
Furthermore, mothers and daughters in a cooperative relationship attempt
to work together as a team. They strive to be flexible and attentive to one
another’s needs. Julie’s mother, Claire, comments,
I really do rely more on her. When she makes a plan, or something like that,
I try to make sure I go along with it because that’s something she’s spent
some thought on.
She took me to the eye doctor’s [office] today but I don’t like to put too much
on her shoulders because she’s got enough to do already. . . . I try not to bother
her because God only knows, I don’t know how she does what she does. I hate
to be a pest or a nuisance . . . so I make that [requests] a minimum.
Ward-Griffin et al. / Dementia Care
25
Although both custodial relationships and cooperative relationships are
focused on “doing” tasks, the desire to work together as a team in the cooperative relationship facilitates rather than impedes the care process between
mothers and daughters. In essence, no task is too large. Moreover, mothers
and daughters in a cooperative relationship tend to have a strong family network for support. As a result, they have the capacity to handle almost anything, premised on the belief that “families can take care of their own”; as
a consequence, there is a high level of satisfaction and gratification with the
care provided and received.
I see mom two to three times a week. It depends what she needs. But I am
there when she needs me . . . it just seems sad the way roles are reversed. It’s
just this is something we need to do for her. And you can’t really think about
it, you have to do it, you know. It’s just the way it is . . . but I am okay with
doing what I want to do. (Diane, daughter)
I think my relationship with Diane is good. I depend on her quite a bit you know,
and she is always there . . . so what more do I need? And she is very thoughtful.
She brings me little dinners and stuff like that. I have no complaints. I am satisfied. . . . She does anything I want, and when she can’t, I then have to depend on
my other children [another daughter and two sons]. (Emily, mother)
Cohesive
The final mother-daughter relationship is a cohesive relationship, one that
is emotion focused and strength based. A positive, mutual emotional bond or
attachment exists between the mother and daughter. In addition, similar to the
cooperative relationship, rather than focusing on the deficits of the disease,
the daughter in a cohesive relationship is cognizant of her mother’s strengths
and need for independence. One daughter, Donna, states,
Oh, my mother [Hazel] and I have always been good friends. . . . I’d do anything for mom, but I would like her to be as independent as possible. And
occasionally she will say to me, “I can take care of myself.” I say, “Of course
you can. Of course you can.”
Another daughter reaffirmed the importance of her mother making independent decisions for as long as possible. Moreover, Alice explains how
time spent with her mother, Margaret, is rewarding for both of them:
We do have a lot of laughs even with mom’s memory problems. Even though
she is at the stage that she is at, we feel that when we get together we have a
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Journal of Family Nursing
lot of fun. When she gets in the car she just wants to go. She chooses the
restaurants and she chooses how we are going to do our route. . . . My mom
just loves to get out on her own and she is the one who directs the day and I
am the follower. That is pretty special. Those are just fun times.
Another daughter, Bev, talks about the importance of reciprocity and
how her mother’s dementia has fostered personal growth:
It is really a pleasure to help her and like I just can’t get enough of her. . . . I
can sit and have a discussion with my mother about anything. She is very
wise. . . . It’s a privilege to give back what I got . . . but I don’t really feel that
I’ve given so much than I feel as if I’ve learned.
As noted in the previous quotations and the one following, “power with,”
not “power over” as in the combative relationship, is the dominant feature
of a cohesive relationship. “Power with” involves mutual problem solving
as aptly described by Alice, who began to first notice her mother’s symptoms of dementia:
Mom started asking the family for help and everybody got involved, not just
myself. I became a listener for a long time and just trying to help sort it out,
[such as] What is happening to her? What does she want me to do about it?
How much should I intervene? How much should I hold back? I was able to
get lots of help from lots of family members. And mom . . . she is willing to
listen. . . . You ask her what she would like to do, and she wanted help . . .
she knew something was wrong.
Her mother, Margaret, concurs with Alice’s assessment of the relationship and how they worked together to make the best of this situation:
I don’t think we can have a closer or a better relationship because we enjoy
things together. We seem to look at things in the same way. . . . In regard to
when I was in the hospital, she was able to talk with the doctors and the
nurses. . . . Sometimes when I wasn’t getting the drift, she could get that
across . . . but I noticed that she always held back and gave me a chance to
speak and then if she thought I was a little stuck on something then she would
say something. . . . It was all made so much easier.
When I was in the hospital, she was able to talk to the doctors and the nurses
in a way that I couldn’t. . . . Sometimes when I wasn’t getting the drift, she
would get that across. . . . She also goes to the doctor’s [office] with me. She
listens. She keeps it all straightened in my mind.
Ward-Griffin et al. / Dementia Care
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In direct contrast to the combative relationship, self-actualization and
mutual growth rather than alienation occur in a cohesive mother-daughter
relationship, even as AD continues to rob one mother of her independence:
I think if every mother had a daughter like I have they’d be very, very happy.
. . . I, I just worship her. I really do. And you know, I think if, if I call her
she’ll say, “I’ll be right over there mom.” If I’m, you know, not well, she’ll
say, “I’ll slip over.” (Hazel)
Discussion and Implications
Given the complexity of dementia care relationships, it is important that
we extend our knowledge of the ways in which caregivers and care recipients perceive their experiences. Research methods that include both perspectives of care help us explore areas that other methods may not reach.
The primary goal of this qualitative study was to better understand mothers’ and daughters’ perceptions of their relationships in dementia care, the
factors that shape these experiences, and the resulting health outcomes. The
findings from this study extend our knowledge of dementia care relationships in many ways. Moreover, study findings highlight a number of implications for practice, policy, and research.
First, the study findings revealed four unique relationships between mothers and daughters: custodial, combative, cooperative, and cohesive. This finding is significant in that it recognizes the various types of relationships among
persons with dementia and their caregivers, which differ in perceptions of
deficits, strengths, tasks, and emotions. For instance, there are two types of
mother-daughter relationships that reflect a task based approach to care:
one that focuses on deficits (custodial) and one that focuses on strengths
(cooperative) of the relationship. Although both of these relationships are
centered on the tasks of dementia care, the health experiences of mothers
and daughters were quite different. In custodial relationships, accounts of
caregiver/care-receiver stress and dissatisfaction were in direct contrast to
reports of cooperation and satisfaction within cooperative relationships. In
addition, it is interesting to note that the custodial and combative motherdaughter relationships tended to result in negative outcomes, such as care
recipient alienation and caregiver burden. Within these relationships, deficits
of the caregiver, care recipient, and the relationship may lead to negative outcomes for both the caregiver and care recipient. In contrast, strength based
complementary and cohesive relationships produced positive outcomes, such
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Journal of Family Nursing
as mutual growth and gratification. These findings suggest that health care
providers need to be aware of how different types of relationships between
caregivers and care recipients produce different experiences for caregivers and
care recipients. In addition, assessment of the perceptions and health experiences of both mothers with dementia and their caregiving daughters would be
helpful to identify and prevent potential negative health outcomes. At the
same time, opportunities to promote positive health outcomes, such as mutual
growth, need to be fostered whenever possible. As recommended by Allen and
Walker (1992), positive outcomes need to be considered as essential a component of the caregiving relationship as role strain and burden.
Second, study findings illustrate that different mother-daughter relationships may require different practice interventions. For example, it is important to validate and reinforce a collaborative approach used in a cohesive
relationship. Mothers and daughters in this relationship may be assisted in
finding alternative mutually satisfying activities as the disease progresses.
However, mothers and daughters in a cooperative relationship may reconsider the amount of caregiving assumed by the family and perhaps consider
obtaining some formal support. Similarly, daughters and mothers in a custodial relationship may benefit from respite and assistance with some of the
tasks of caregiving. Finally, daughters in a combative relationship may seek
counseling to help them to reflect on the potential negative effects of a
“power over” approach to care. Thus, practitioners need to assess the type
of mother-daughter relationship and suggest appropriate interventions.
Third, study findings revealed that the custodial, combative, cooperative,
and cohesive relationships are dynamic; mothers and daughters may fit
within one prototype or may move among them. For instance, a motherdaughter relationship may change from one type to another depending on a
number of intrinsic and extrinsic contextual factors: intimacy between mother
and daughter, familial care expectations, and informal and formal care supports. A custodial relationship could become a combative relationship if the
level of support from both informal and formal sources is lacking. Current
policies that view families as the cornerstone of home care are potentially
harmful to women’s health, both as caregivers and those receiving care
(Guberman, 2004). Because there are few publicly funded supports to assist
with the care of older women with dementia and other chronic conditions
(Dalley, 1996; Guberman, 2004; Krogh, 2004), it is imperative that personal
support and homemaking services are available to mothers with dementia to
enable them to remain at home without having to rely solely on their
Ward-Griffin et al. / Dementia Care
29
daughters. This is particularly important for those mothers in combative or
custodial relationships. Comprehensive formal health and social services may
also address common experiences of alienation and guilt among persons with
dementia, a finding in this study and other investigations (Aronson, 1991;
Ward-Griffin et al., 2006). Thus, study findings affirm the need to identify
and implement appropriate community-based programs and policies to better
meet the needs of both caregivers and care recipients in dementia care.
The fourth and final area that needs to be addressed in light of the study
findings is related to further research directions. Although this study differs
from previous work in that it focuses on an understudied topic of dyadic
perspectives of the dementia care process, there is a need to better understand how certain contextual factors shape women’s health experiences
within dementia care. Previous research shows that family caregivers who
have limited resources in terms of money or time experience difficulties in
caregiving (Stephens et al., 2001). In this study, daughters involved in a
custodial or combative relationship tended to have fewer resources than
those women in cooperative or cohesive relationships. Potential implications for research might arise from the variations in mother-daughter relationships within dementia care. More needs to be known about the type of
negotiation strategies employed by mothers and daughters within these four
types of relationships and how the length of involvement in the dementia
care process may contribute to the movement between and among these
relationships. To that end, further research might address those situations
that are potentially harmful to the care recipient/caregiver. This information
is particularly important for nurses who are working in dementia family
care situations. Finally, further research in dementia care needs to address
one of the study limitations of restricting participation to persons in the earlier stages of dementia. Because individuals in the later stages are still in
possession of an intact sense of personal identity (Sabat, 1998), it is important to collect stories from individuals in all stages of dementia.
In conclusion, this study has contributed to the advancement of knowledge in family nursing; however, we must continue to broaden our understanding of the relationships between mothers and their daughters within
the context of dementia care. This is the goal of feminist nursing research—
to develop knowledge with the aim of recommending positive changes in
practice, policy, and research. Ultimately, these recommendations must be
sensitive to the needs of both the caregiver and care recipient in dementia
care, thereby improving the lives of mothers and daughters within this
intergenerational relationship.
30
Journal of Family Nursing
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Catherine Ward-Griffin, RN, PhD, is an associate professor at the School of Nursing,
University of Western Ontario, and a scientist at the Lawson Institute of Health Research. Her
teaching and research interests include family and community nursing, health promotion, and
qualitative methodologies. Using primarily a qualitative approach to inquiry, she has conducted
research in the area of interpersonal relationships between and among clients, families, and
providers in both long-term care and home care settings. Her most recent project is a critical
ethnographic investigation of client-caregiver-provider relationships in home-based dementia
care. Her recent publications include the chapter “Mother-Daughter Relationships Within the
Care Process of Dementia: The Daughters’ Perspective” in Family Caregiving to Older Disabled
People: Relational and Institutional Issues (in press, with N. Bol), “Double-Duty Caregiving:
Women in the Health Professions” in Canadian Journal on Aging (2005, with J. B. Brown,
A. Vandervoort, S. McNair, & I. Dashnay), and “Canadian Families Caring for Members With
Mental Illness: A Vicious Cycle” in Journal of Family Nursing (2005, with S. Vos, R. Schofield,
& R. Coatsworth-Puspoky).
Abram Oudshoorn, RN, BScN, is a doctoral student in nursing at the University of Western
Ontario. His main research interest is in caregiving relationships, particularly in community or
home-based care. Having explored client-provider relationships in home-based dementia care for
his master’s research, he is now looking at these relationships in community care with people
who are experiencing homelessness. He continues to work as a staff nurse at the London
InterCommunity Health Centre, serving vulnerable and marginalized populations. His recent
publications include “Power and Empowerment: Critical Concepts in the Nurse-Client
Relationship” in Contemporary Nurse (2005), “Perspectives of Women With Dementia
Receiving Care From Their Adult Daughters” in Canadian Journal of Nursing Research (2006,
with C. Ward-Griffin & N. Bol), and “Nurse-Client Relationships in Home-Based Palliative
Care: A Critical Analysis of Power Relations” in Journal of Clinical Nursing (in press, with
C. Ward-Griffin & C. McWilliam).
Kristie Clark, RN, MScN(c), is a clinical nurse specialist with the Regional Geriatric outreach team in London, Ontario. Her research interests include geriatrics, social support, and
rural health issues. At the present, she is completing her MScN at the University of Western
Ontario. Her thesis is entitled “The Relationship Between Social Support and Health in
Canadian Seniors: A Comparison of Urban and Rural Seniors.”
Nancy Bol, RN, MScN, is an advanced practice nurse working as an independent consultant.
She is an adjunct assistant professor with the University of Western Ontario Faculty of Health
Sciences, School of Nursing, a lecturer with the Faculty of Medicine and Dentistry, Department
of Psychiatry, an adjunct member of the Division of Geriatric Psychiatry, and an associate scientist with the Lawson Health Research Institute. Her clinical interests include early intervention
for people with dementia and pain management in older adults living in institutional settings. Her
recent publications include “Beyond Knowledge Transfer: A Model of Knowledge Integration
in a Clinical Setting” in Healthcare Management (2005, with N. Gauthier, K. Ellis, & P. Stolee)
and “Perspectives of Women With Dementia Receiving Care From Their Adult Daughters” in
Canadian Journal of Nursing Research (2006, with C. Ward-Griffin & A. Oudshoorn).