Mother - Adult Daughter Relationships Within Dementia Care

Mother - Adult Daughter Relationships Within Dementia Care: A Critical Analysis 

Catherine Ward-Griffin, RN, PhD, Abram Oudshoorn, RN, BScN, Kristie Clark, RN, MScN, Nancy Bol, RN, MScN, University of Western Ontario 

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This article is a shortened version of a paper published in the Journal of Family Nursing (2007), 13, 13-32. The authors gratefully acknowledge support from the Marian and Chester Fish Research Grant from the Alzheimer’s Society of London and Middlesex, Ontario, Canada.

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 (Poirer & Ayres; 2002). Moreover, family caregiving takes place within a historical context since bonds of affection and reciprocity that sustain caregiving are rooted in past relationships (Pallett, 2001). Many argue that the mother-daughter bond is central to the lives of women (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.  

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 over 750,000 persons by 2030, with approximately half of the individuals living in the community (CSHA Working Group, 1994).  Recent changes in patterns of care provision, including health care restructuring, the closure of long-term care facilities and under funding of home care (Chappell, 1999; Strang & Koop, 2003) have led to an increasing reliance on daughters to provide care for their aged mothers. In order 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 daughters within the context of dementia care.

Purpose  

The purpose of this qualitative study was to develop a better understanding of the care giving/receiving experiences of adult 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 involved 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). This study focuses 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. Because so little is known about the experiences of mothers and adult daughters within dementia care, an exploratory qualitative approach was chosen.

Recruitment & Sample  

This study contained a diverse sample of 10 community-dwelling mothers with mild to moderate cognitive impairment and their 15 caregiving daughters. The mean age of the mothers was 84.6 years. Mother participants who obtained a standardization mini-mental status examination score (SMMSE) of 17 or over were invited to participate in the study. At the time of the first set of interviews, the mothers lived either in their own homes, in their daughters’ homes, or 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. The majority were Canadian (55%), married (64%), had at least a post-secondary education (50%) and were employed, either full-time (50%) or part-time (14%).  Daughters reported that they had been providing daily to weekly assistance for the mothers for an average of 49 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).   

Data Collection and Analysis  

In-depth interviews and the corresponding field notes of each interview were the major data source used in this study. Two audiotaped interviews, 6-9 months apart, were conducted. The participants were asked non-directive questions designed to trigger dialogue about their experiences in providing/receiving care, the mother-daughter relationship, and the factors influencing the process of care.  

Preliminary data analysis focused on addressing key defining characteristics, contextual factors and health experiences of the mothers and daughters that emerged within the data. Using NUD*IST, a software program, to facilitate this analysis (Richards & Richards, 1994), each researcher independently and collectively contributed to the development of a typology of mother-daughter relationships within the context of dementia care (see Figure 1).  

Figure 1: Mother-Daughter Relationships Within Dementia Care  
 

Findings  

There were two major, dialectical dimensions of the mother-daughter relationship: 1) task focused-emotion focused, and 2) deficit based-strength based.  A typology depicting 4 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.

Custodial  

In the mother-daughter custodial relationship, the defining characteristic is one of “duty”, where both the mother and daughter report that familial caregiving expectations are the main motivator and reason for their interactions.  

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 accordingly. 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.  

The main health experience of a task focused, deficit based custodial relationship is one of objectification leading to potential caregiver and/or care recipient burden, particularly as the disease progresses over time. Theoretically, a custodial mother-daughter relationship could easily slip into the second type discussed below, a combative mother-daughter relationship.

Combative  

Similar to the custodial relationship, the mother-daughter combative relationship exists primarily to address the cognitive deficiencies of the mother.  The distinctive feature of this emotionally charged relationship is one of “power over” where both the mother and daughter compete for control or authority over the dementia care process.  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.  

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 behaviours and activities of daily living while the mother tends to resist her daughter’s control. 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 alienation of the mother. 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.

Cooperative  

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 a reciprocal cooperation between mother and 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.  

Although both the custodial relationship 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.  Moreover, mothers and daughters in a cooperative relationship tend to have a strong family network for support. There is a high level of satisfaction and gratification with the care provided and received.

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. “Power with” not “power over” as in the combative relationship, is the dominant feature of a cohesive relationship.  “Power with” involves mutual problem solving.

Discussion and Implications  

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, this study 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 approach to care, one that focuses on deficits (custodial) while the other focuses on strengths (cooperative) of the relationship. In contrast, strength based combative and cohesive relationships produced positive outcomes, such as mutual growth and gratification. These findings suggest that health care providers need to be aware of how the different types of relationships between caregivers and care recipients produce different experiences for caregivers and care recipients.  

Second, 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.  

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 mother-daughter 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.   Since 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 in order to enable them to remain at home without having to rely solely on their daughters. 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 is related to future research directions. 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). 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. Finally future research in dementia care needs to include individuals in the later stages of dementia. It is important to collect stories from individuals in all stages of dementia.  

In conclusion, this study highlights the importance of examining the current pattern of care between adult caregiving daughters and their mothers with dementia. However, we must continue to broaden our understanding of the relationships between family members within the context of dementia care if we hope to provide quality care for frail seniors with cognitive impairment and their families in the future. 

Мать - дочь взрослых отношений в Деменция обслуживания: критический анализ  

Кэтрин Уорд-Гриффин, RN, PhD, Абрам Аудсхорн, RN, BSCN, Кристи Кларк, Р. Н., MSCN, Нэнси Бола, Р. Н., MSCN, Университет Западного Онтарио  

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Данная статья является сокращенной версией статьи, опубликованной в журнале семейных медсестер (2007), 13, 13-32. Авторы выражают благодарность поддержке Мариан и Честер Рыба Исследовательский грант Альцгеймера общество Лондона и Миддлсекс, Онтарио, Канада.

Справочная и  значение  

Уход является реляционной, и не может быть отделена от опыта людей друг от друга в  прошлом, настоящем или даже ожидаемым в будущем (Poirer и Эрс, 2002). Кроме того, семьи ухода происходит в историческом контексте, поскольку узами любви и взаимности, которые поддерживают уход уходит корнями в прошлые отношения (Pallett, 2001). Многие утверждают, что мать-дочь связи занимает центральное место в жизни женщин (Allen & Walker, 1992). С учетом увеличения продолжительности жизни женщин и гендерные роли ожидания женщин брать на себя роль основных опекунов для семьи и друзей (Armstrong & Армстронг, 2004); поколениями ухода между матерями и дочерьми будет становиться все более распространенным явлением.  

Как старший  населения Канады растет, все большее  число людей будет требовать  ухода за болезни Альцгеймера (БА). Распространенность АД в Канаде, как  ожидается, возрастет с примерно 364 000 лиц в 2000 году до более 750000 лиц к 2030 году, примерно половина людей, живущих в сообществе (ЦГИА Рабочей группы, 1994). Последние изменения в модели ухода, включая здравоохранение реструктуризации, закрытия долгосрочных санитарной помощи и в рамках финансирования из дому (Chappell, 1999; Странг и Koop, 2003) привели к растущей зависимости от дочерей, чтобы обеспечить уход за их возраста матерей. В целях выявления и реализации соответствующих программ и политики, укрепление здоровья и благополучия как воспитатели и получателей помощи, мы должны расширить наше понимание отношений между сообщества, обитающие матерей и их дочерей в контексте деменции помощи.

Цель  

Цель этого  качественного исследования была разработка лучшего понимания ухода давая / получения опыта взрослых дочерей и их матерей с мягкой и умеренной когнитивных нарушений. В частности, мы были заинтересованы в следующие вопросы:) Как дочери / матери описать их отношения друг с другом в рамках деменции помощи? б) Какие контекстуальные факторы формируют эти отношения? и в) Какие здоровья опытом матерей и дочерей, участвующих в слабоумие помощи?  

Метод  

Опыт показывает, что уход опыт отличается от пола, от отношения членов семьи получателя помощи, а также состояние здоровья подопечного (Дюпюи и Норрис, 2001). Это исследование фокусируется исключительно на взрослых дочерей забота о матери с мягкой и умеренной когнитивных нарушений. Этот тип исследования фокусируется на отдельных субъективных представлений о помощи опыта женщин, и в то же время, идет на колебания характер мать-дочь отношения с течением времени. Потому что так мало известно о опытом матери и взрослой дочери в слабоумие помощи, поисковый качественный подход был выбран.

Набор и Примеры  

Это исследование, содержащееся разнообразных образцов из 10 общин жилых матерей с мягкой и умеренной когнитивных нарушений и их 15-ухода дочери. Средний возраст матерей был 84,6 лет. Матери участников, которые получили стандартизации мини-психического статуса оценка экспертизы (SMMSE) от 17 лет и старше было предложено принять участие в исследовании. Во время первой серии интервью, матери жили либо в своих собственных домах, в домах своих дочерей, или проживают в домах для престарелых. Большинство матерей были вдовами (78%), канадский (55%) и получил доход менее $ 20 000 (71%).  

Средний возраст  для дочери было 49,6 лет. Большинство  из них были канадские (55%), замужем (64%), по крайней мере после окончания  среднего образования (50%) и были заняты, либо полный рабочий день (50%) или неполный рабочий день (14%). Дочери сообщили, что они оказывают ежедневно еженедельно помощи для матерей в среднем на 49 месяцев. Все дочери, за одним исключением, жили в одном городе с их матерями. В среднем, дочерей при условии регулярной помощи матерям (3 дня в неделю).  

Сбор и анализ данных  

В глубинных  интервью и соответствующие примечания поле каждого интервью были основным источником данных, используемых в  данном исследовании. Два audiotaped интервью, 6-9 месяцев друг от друга, были проведены. Участникам было предложено не-директивы вопросов, предназначенных для запуска диалога об их опыте в обеспечении / получения медицинской помощи, мать-дочь отношения, и факторы, влияющие на процесс лечения.  

Предварительный анализ данных сосредоточены на решении ключевых определяющих характеристик, контекстуальные факторы и здоровье опыта матерей и дочерей, которые возникли в рамках данных. Использование NUD * IST, программное обеспечение, чтобы облегчить этот анализ (Ричардс и Ричардс, 1994), каждый исследователь самостоятельно и коллективно способствовал развитию типология мать-дочь отношений в контексте развития деменции помощи (см. рисунок 1).