Abstract
Historically, research, practice, and policy on Alzheimer’s family care has been largely focused on dyadic relationships and the experience of burden and stress, often failing to capture the complex caring dynamics as they unfold over time. This study sought to develop a more nuanced understanding of how people with Alzheimer’s disease (AD) and their families are affected by the disease and how they respond to the challenges AD poses.
Using constructivist grounded theory, the study explored the experiences of living with AD for native Spanish families residing in Navarra. Data were collected from a series of 26 interviews with seven family units living with early stage AD and further validated with three focus groups with 14 caregivers of people with mid/advanced AD. Data were analyzed to capture the main processes involved and charted how these evolved over time.
Keeping things in balance describes the way family works to preserve a balance between caring and their lives before the onset of AD. Three main temporal stages to the experience of early AD, along with their associated processes, were identified: (a) what’s going on here and the processes of noticing, suspecting, and confirming; (b) our life is changing underpinned by the processes of watching and redefining; and (c) keeping things together and its associated balancing process. These reinforced the dynamic nature of living with AD over time.
This study was novel in its design as it included the person with AD as part of the functioning family unit. The temporal stages and the key social processes identified have the potential to inform the development of “stage-specific” interventions for the support of the whole family at various points in time.
According to official United Nations population estimates in 2015, there were 46.8 million people living with dementia globally, with this figure set to increase to 74.7 million in 2030 and 131.5 million in 2050 (Alzheimer’s Disease International, 2015). Alzheimer’s disease (AD) represents the most common type of dementia, especially among those aged 60 and over, accounting for 60%–70% of cases.
In Spain, the estimated prevalence of AD for people aged over 60 varies between 5.2% and 16.3%, reaching 22% in men aged over 85% and 30% in women of the same age (López-Pousa & Garre-Olmo, 2010). This equates to 1.2 million people supported by about 6 million family carers, representing 13% of the total Spanish population.
The economic costs of AD range from $12, 721 to $25, 437 per person per year in Spain, 10%–15% of this covered by the state and the rest borne by the family (Atance Martínez, Yusta Izquierdo, & Grupeli Gardel, 2004). However, such figures fail to capture the effects of AD on the quality of life of those living with the condition and their families. In Spain, the provision of long-term care falls primarily on the family who provide more than 85% of the support needed.
However, a range of recent societal changes, such as population ageing, the “verticalization of the family,” greater numbers of Spanish women entering the labor market, and new patterns of family relationships have reduced the availability of family support, requiring that the Spanish welfare system takes greater responsibility and works in partnership with the family (Brullet, 2010; Serrano, Latorre, & Gatz, 2014). This will require the development of services designed to both complement the family’s caring efforts and to maintain them in their role without placing undue burden upon them.
Historically, most interventions designed to support family carers have focused on the instrumental dimensions of care (e.g., assisting with activities of daily living and physical and mental stimulation) and have been primarily motivated by economic and pragmatic concerns (Nolan et al., 2008). However, it has been argued for some time that family care cannot be defined as merely the performance of tasks and practical activities but also includes a range of invisible and intangible elements. For instance, Bowers (1987), in her study of female children caring for older adults with dementia, explored the meaning and purpose of care for those providing it. As a result, she developed a nuanced typology of varying types of care which differed in purpose and goals over time (Table 1). This typology was later revised and refined by Nolan, Grant, and Keady (1996), providing a differing view on the meaning of care and how it evolves over time (Table 1). Family care is now widely recognized as a temporal experience that may both start and end unpredictably. Unfortunately, this broader understanding of the caring experience has not been fully considered when developing family-care support strategies; with most services throughout Europe still focusing on instrumental activities, designed primarily to maintain family carers in their role, and services often being reactive rather than proactive (Nolan et al., 2008).
Bowers (1987) and Nolan et al.’s (1996) Typology of Care
| Types of care | Bowers (1987) | Nolan et al. (1996) |
|---|---|---|
| Anticipatory care | This is based on the idea of anticipating future need, with the key-notion being “just in case.” | Redefined as a more pervasive and prolonged activity that changes in nature and form over time, from “anticipating possible events” to “anticipating likely events.” |
| Preventive care | This implies “monitoring at a distance.” Both, anticipatory and preventive care, are deliberately kept from the person concerned. However this cannot be sustained over time as more “direct care” is needed. | No changes were included. |
| Supervisory care | There is a closer monitoring of activity meaning that the cared-for person is more likely to be aware of it. | No changes were included. |
| Instrumental care | Referring to the practical aspects of care. | No changes were included. |
| Protective care-Preservative care | These involve those care strategies with the purpose of maintaining the self-esteem of those being cared for. In a later study protective care was replaced by the notion of preservative care, based on the need to preserve the cared-for person’s sense of “self.” | Although protective care is motivated by high ideals, it is a care strategy of relatively limited duration and value. Preservative care also occurs throughout the various stages of the caregiving history but extends beyond preserving dignity and self-esteem (Bower’s typology) to include the preservation of skills, abilities, and interests of the affected person. |
| (Re)constructive care | - | A new category is added. It aims at “building upon the past” in order to develop new and valued roles for both the cared-for-person and the family carer. |
| Reciprocal care | - | Recognized as the core category that acknowledges the mutual and reciprocal elements in a caregiving relationship, a major limitation of Bowers’ model. |
| Types of care | Bowers (1987) | Nolan et al. (1996) |
|---|---|---|
| Anticipatory care | This is based on the idea of anticipating future need, with the key-notion being “just in case.” | Redefined as a more pervasive and prolonged activity that changes in nature and form over time, from “anticipating possible events” to “anticipating likely events.” |
| Preventive care | This implies “monitoring at a distance.” Both, anticipatory and preventive care, are deliberately kept from the person concerned. However this cannot be sustained over time as more “direct care” is needed. | No changes were included. |
| Supervisory care | There is a closer monitoring of activity meaning that the cared-for person is more likely to be aware of it. | No changes were included. |
| Instrumental care | Referring to the practical aspects of care. | No changes were included. |
| Protective care-Preservative care | These involve those care strategies with the purpose of maintaining the self-esteem of those being cared for. In a later study protective care was replaced by the notion of preservative care, based on the need to preserve the cared-for person’s sense of “self.” | Although protective care is motivated by high ideals, it is a care strategy of relatively limited duration and value. Preservative care also occurs throughout the various stages of the caregiving history but extends beyond preserving dignity and self-esteem (Bower’s typology) to include the preservation of skills, abilities, and interests of the affected person. |
| (Re)constructive care | - | A new category is added. It aims at “building upon the past” in order to develop new and valued roles for both the cared-for-person and the family carer. |
| Reciprocal care | - | Recognized as the core category that acknowledges the mutual and reciprocal elements in a caregiving relationship, a major limitation of Bowers’ model. |
Bowers (1987) and Nolan et al.’s (1996) Typology of Care
| Types of care | Bowers (1987) | Nolan et al. (1996) |
|---|---|---|
| Anticipatory care | This is based on the idea of anticipating future need, with the key-notion being “just in case.” | Redefined as a more pervasive and prolonged activity that changes in nature and form over time, from “anticipating possible events” to “anticipating likely events.” |
| Preventive care | This implies “monitoring at a distance.” Both, anticipatory and preventive care, are deliberately kept from the person concerned. However this cannot be sustained over time as more “direct care” is needed. | No changes were included. |
| Supervisory care | There is a closer monitoring of activity meaning that the cared-for person is more likely to be aware of it. | No changes were included. |
| Instrumental care | Referring to the practical aspects of care. | No changes were included. |
| Protective care-Preservative care | These involve those care strategies with the purpose of maintaining the self-esteem of those being cared for. In a later study protective care was replaced by the notion of preservative care, based on the need to preserve the cared-for person’s sense of “self.” | Although protective care is motivated by high ideals, it is a care strategy of relatively limited duration and value. Preservative care also occurs throughout the various stages of the caregiving history but extends beyond preserving dignity and self-esteem (Bower’s typology) to include the preservation of skills, abilities, and interests of the affected person. |
| (Re)constructive care | - | A new category is added. It aims at “building upon the past” in order to develop new and valued roles for both the cared-for-person and the family carer. |
| Reciprocal care | - | Recognized as the core category that acknowledges the mutual and reciprocal elements in a caregiving relationship, a major limitation of Bowers’ model. |
| Types of care | Bowers (1987) | Nolan et al. (1996) |
|---|---|---|
| Anticipatory care | This is based on the idea of anticipating future need, with the key-notion being “just in case.” | Redefined as a more pervasive and prolonged activity that changes in nature and form over time, from “anticipating possible events” to “anticipating likely events.” |
| Preventive care | This implies “monitoring at a distance.” Both, anticipatory and preventive care, are deliberately kept from the person concerned. However this cannot be sustained over time as more “direct care” is needed. | No changes were included. |
| Supervisory care | There is a closer monitoring of activity meaning that the cared-for person is more likely to be aware of it. | No changes were included. |
| Instrumental care | Referring to the practical aspects of care. | No changes were included. |
| Protective care-Preservative care | These involve those care strategies with the purpose of maintaining the self-esteem of those being cared for. In a later study protective care was replaced by the notion of preservative care, based on the need to preserve the cared-for person’s sense of “self.” | Although protective care is motivated by high ideals, it is a care strategy of relatively limited duration and value. Preservative care also occurs throughout the various stages of the caregiving history but extends beyond preserving dignity and self-esteem (Bower’s typology) to include the preservation of skills, abilities, and interests of the affected person. |
| (Re)constructive care | - | A new category is added. It aims at “building upon the past” in order to develop new and valued roles for both the cared-for-person and the family carer. |
| Reciprocal care | - | Recognized as the core category that acknowledges the mutual and reciprocal elements in a caregiving relationship, a major limitation of Bowers’ model. |
Moreover, much of the research on family care has historically adopted a stress-burden model and has tended to focus on the needs of the caregiver or person with dementia in relative isolation (Nolan et al. 1996). However, Keady (1999), in his work on the dynamics of dementia, drew attention to the importance of prior relationships in shaping the context of the dementia experience. He argued that carers and PWD parties may “work” either together, separately, or apart which shapes the nature of the caring experience.
More recently, further dyadic and triadic models have started to emerge that have shifted the focus toward the impact of dementia on the relationships between people with dementia and those family and formal caregivers supporting them (Quinn, Clare, McGuinness, & Woods, 2012; Whitlatch, Judge, Zarit, & Femia, 2006). The majority of this research has been dyadic in focus and predominantly considered spousal relationships (Hellström, Nolan, & Lundh, 2007), rarely extending its gaze to other family members or the potential impact of dementia upon the family system (Keady & Harris, 2009). The relatively small number of studies that have adopted a wider family perspective suggest that living with AD may destabilize the normal functioning of the family unit (Allen, Oyebode, & Allen, 2009; De la Cuesta & Sandelowski, 2005), challenging family members to develop new patterns of daily life.
At the same time, there is growing recognition of the need for the state and the family to work in partnership (Nolan et al., 2008). If this is to be achieved, there is a need for far greater understanding of how the family lives with AD and the type of support they may need at differing points in their caregiving career. This is especially important in countries like Spain where there have been very few prior studies of this type and state support for family caregivers is poorly developed.
The purpose of the study was, therefore, to develop a more nuanced understanding of how people with AD (pwAD) and their families experience their lives, especially the impact the condition has on the structure and dynamics of the family unit, and how they respond to the challenges AD poses over time.
Design and Methods
The primary aims of the study were to explore (a) how do families, including the pwAD, experience the impact of AD; (b) what does the experience mean to the pwAD and the family; (c) how does this perception influence the ways in which the family works in the context of AD; and (d) how do family history and circumstances influence the experience of illness.
A Constructivist Grounded Theory (GT) study was conducted to explore these issues as this methodology facilitates an understanding of the complex social processes that underpin human interactions over time while also generating theoretical insights that have practical application (Charmaz, 2006). Importantly, it also acknowledges the existence of multiple social realities and the coconstruction of “knowledge” to produce interpretable understanding of subjective meanings (Charmaz, 2009). As a result, the participants themselves played an active role in the research process.
Sampling and Recruitment
The study was conducted in Navarra (Spain) and was approved by the Ethics Committee Board at the University of Navarra. Families living with early stage AD were recruited through the memory unit of the San Francisco Javier Psychogeriatric Hospital, the center for early cognitive assessment and intervention in the city. Those families who fulfilled the inclusion criteria (Table 2) and seemed to be interested in taking part in the study were identified and approached by the nursing staff at the memory unit. If families confirmed their interest in the study, a personal meeting was arranged with the primary researcher to provide detailed information on the nature, purpose, and procedures of the study. Both pwAD and relatives were present. About a week later, agreement to participate was confirmed and for those who agreed, a date was set for the first interview.
Inclusion Criteria
| Family composed by: | |
|---|---|
| Older person | Other family members |
| • Aged 65 and over, of either gender | • That supported a relative with AD either in the person’s or their own home. |
| • Who lived at home | • Living with the pwAD was not necessary but they lived close enough to assume a share of care activities or were deemed by the pwAD to provide them with important sources of support. |
| • With a diagnosis of suspected Alzheimer’s disease established by clinical examination, the Mini-Mental State Examination, and confirmed by neuropsychological tests | |
| • At an early-mild stage of the disease. | |
| Family composed by: | |
|---|---|
| Older person | Other family members |
| • Aged 65 and over, of either gender | • That supported a relative with AD either in the person’s or their own home. |
| • Who lived at home | • Living with the pwAD was not necessary but they lived close enough to assume a share of care activities or were deemed by the pwAD to provide them with important sources of support. |
| • With a diagnosis of suspected Alzheimer’s disease established by clinical examination, the Mini-Mental State Examination, and confirmed by neuropsychological tests | |
| • At an early-mild stage of the disease. | |
Note: Judgments about pwAD’s suitability for the study were also informed by discussions with professionals at the center who knew these people well. Professional judgments were made based on the person’s adjustment and willingness to talk about their memory loss; level of competence and ability to understand and give informed consent; and retained verbal fluency and level of concentration. AD = Alzheimer’s disease.
Inclusion Criteria
| Family composed by: | |
|---|---|
| Older person | Other family members |
| • Aged 65 and over, of either gender | • That supported a relative with AD either in the person’s or their own home. |
| • Who lived at home | • Living with the pwAD was not necessary but they lived close enough to assume a share of care activities or were deemed by the pwAD to provide them with important sources of support. |
| • With a diagnosis of suspected Alzheimer’s disease established by clinical examination, the Mini-Mental State Examination, and confirmed by neuropsychological tests | |
| • At an early-mild stage of the disease. | |
| Family composed by: | |
|---|---|
| Older person | Other family members |
| • Aged 65 and over, of either gender | • That supported a relative with AD either in the person’s or their own home. |
| • Who lived at home | • Living with the pwAD was not necessary but they lived close enough to assume a share of care activities or were deemed by the pwAD to provide them with important sources of support. |
| • With a diagnosis of suspected Alzheimer’s disease established by clinical examination, the Mini-Mental State Examination, and confirmed by neuropsychological tests | |
| • At an early-mild stage of the disease. | |
Note: Judgments about pwAD’s suitability for the study were also informed by discussions with professionals at the center who knew these people well. Professional judgments were made based on the person’s adjustment and willingness to talk about their memory loss; level of competence and ability to understand and give informed consent; and retained verbal fluency and level of concentration. AD = Alzheimer’s disease.
Purposive and theoretical sampling was used to identify a range of families and multiple interviews were conducted overtime.
Data Collection
Twenty-six in-depth family interviews were conducted by the primary investigator, over an 18-month period, with seven family units living with early stage AD, each family being interviewed on three or more occasions. A semistructured interview guide was used to explore the experience of AD over time. Questions were not fixed but evolved between sequential interviews, responding to the areas identified by participants. Demographic data were collected at the beginning of each encounter.
Consistent with constructivist GT tenets (Charmaz, 2009), each interview was analyzed before the next took place and themes from the earlier interviews were identified and explored in subsequent ones. The principle of process consent was also applied and participants’ willingness to continue, including pwAD, was confirmed prior to each meeting (Dewing, 2002).
All families were jointly interviewed at least once, providing insights into how they constructed meaning, agreed or disagreed about their situation, and how they thought and acted as a group. Every effort was made to elicit responses from all family members and to avoid potential alliances forming between family members. Separate interviews, both with the pwAD and with the rest of the family, enabled further understanding of the meaning of events from different perspectives and facilitated the exploration of sensitive topics among individuals who were reluctant to speak in front of others (Åstedt-Kurki, Paavilainen, & Lehti, 2001). But even in these separate interviews, the focus was on the relationships, interactions, and dynamics in which the “caring experience” was played out.
Most interviews took place at home and lasted between 35 and 90 min depending largely on the number of interviewees. In total, 9 joint family interviews, 5 interviews with the pwAD, and 12 with relatives (6 individual and 6 dyadic/group interviews) were completed.
Data Analysis
Audio-taped interviews were transcribed verbatim for analysis and participants were assigned pseudonyms for confidentiality. QSR NVivo Software (v8.0) assisted in storing and organizing data and provided visual maps of the codes and categories that emerged.
Charmaz’s (2006) iterative analytical procedures were followed along with theoretical sampling. The sampling of both participating families and events were informed by a simultaneous process of prior data collection and constant comparative analysis.
Initial coding identified key points using word by word, line by line, and incident by incident techniques to identify “in-vivo” codes, keeping the same words as participants whenever possible. The analytical activity at this point focused on identifying significant processes and actions in each segment of data. In assisting this process, some reflective questions were used such as: “What process is at play here? How can I define it? How do participants act while involved in this process? What do participant profess to think and feel while involved in this process? When, why, and how does the process change? What are the consequences of the process?” (Charmaz, 2006, p.51).
Focused coding allowed more detailed elaboration, and further comparative analysis identified conceptual links that clustered and grouped concepts into similar themes and patterns. The most frequent and significant initial codes (e.g., those that provided most analytical sense in classifying and clarifying meaning in the data) were used to sort and synthesize larger segments data. Consequently, a number of focused codes emerged that helped to define significant ideas in the participant’s narratives.
Further comparison of data against data, across and between participants, codes, categories, themes, and incidents was performed. Sequential comparisons were also carried in which data from prior interviews was judged against data provided by subsequent interviews with same participants (Charmaz, 2006). Gradually, conceptual categories and relationships between them emerged leading to the development of a temporal understanding of the family dynamics when living with AD. This comprised three different stages and was underpinned by key social processes. Data analysis (and subsequent data collection) continued until no new events or ideas emerged that could further the theory’s development.
Consultation among the research team members took place throughout the analytical process (with interviews being translated into English where necessary) to facilitate consensus and clarify any ambiguities or discrepancies. In addition, memo-writing served as a means to reflect on the emerging ideas about the data and participants.
Coconstruction of Findings
Consistent with the constructivist ethos, participants were engaged in the interpretation and analysis of the data and the construction of the theory. Much of this occurred naturally as a part of the data collection process but member checking and sharing of study findings with participants was also employed.
Further, coconstruction of the findings was also undertaken in the latter stage of the study. Here, three focus groups with 14 family caregivers of people with AD recruited from the local Association of Relatives of People with AD in the city, were conducted. These carers were living with people in the mid/later stages of AD. The emerging theory was shared with them, following a temporal fashion and supported by examples elicited from the family interviews. The ensuing discussion allowed for further exploration of the stages and social processes.
The rigor for the study was judged using the criteria for GT studies suggested by Charmaz (Table 3).
Criteria for Grounded Theory Studies (Charmaz, 2006; p. 182–183)
| Criteria | How this study met the criteria |
|---|---|
| Credibility Has your research achieved intimate familiarity with the setting or topic? Are the data sufficient to merit your claims? Have you made systematic comparisons between observations and between categories? Do the categories cover a wide range of empirical observations? Are there strong logical links between the gathered data and your argument and analysis? Have your research provided enough evidence for your claims to allow the reader to form an independent assessment-and agree with your claims? | Fieldwork lasting 18 months meant prolonged contact and engagement with family participants. Conducting series of interviews allowed the researcher to gain comprehensive understanding, as well as, to confirm data through the account of the different members that took active part in the study. Substantial interview data over 18 months provided thick descriptions. Member checking through repeated interviews and checking of themes on subsequent visits. Constant comparative analysis procedures, examining and comparing each piece of data with other related piece of data, and the concepts, ideas, and categories emerging. Comparisons between participant’s accounts both across the successive interviews with the same families and between different ones. Reflexive journal kept throughout the study. Memo writing specific to data collection and analysis. Peer debriefing with supervision team and advisory group. |
| Originality Are your categories fresh? Do they offer new insights? Does your analysis provide a new conceptual rendering of the data? What is the social and theoretical significance of this work? How does your grounded theory challenge, extend, or refine current ideas, concepts, and practices? | The study was novel since there was little prior knowledge about the experience of the whole family unit of living with AD at the time the study commence. Discussion on the resonance with prior models was conducted but extending and applied to different context not only culturally but in terms of the unit of study (i.e., the family) |
| Resonance Do the categories portray the fullness of the studied experience? Have you revealed both liminal and unstable taken-for-granted meanings? Have you drawn links between larger collectives or institutions and individual lives, when the data so indicate? Does your grounded theory make sense to your participants or people who share their circumstances? Does your analysis offer them deeper insights about their lives and worlds? | Ensuring data saturation through theoretical sampling and by verifying the completeness of the findings and the emerging model through member checking with the family participants as well as with other family caregivers. Participant’s feedback suggested the study findings helped to discover a number of barely perceptible and taken for granted meanings of their experiences. Family’s account raised diverse issues regarding health and social care they received, drawing implications. Coconstruction of findings between participants and the researcher. Participant’s feedback and verification of the final theoretical model. |
| Usefulness Does your analysis offer interpretations that people can use in their everyday worlds? Do your analytic categories suggest any generic processes? If so, have you examined these generic processes for tacit implications? Can the analysis spark further research in other substantive areas? How does your work contribute to knowledge? | Study findings were confirmed as useful by the study families and the other caregivers during member checking. “Generic” processes were identified and might be transferred to diverse caring circumstances. |
| Criteria | How this study met the criteria |
|---|---|
| Credibility Has your research achieved intimate familiarity with the setting or topic? Are the data sufficient to merit your claims? Have you made systematic comparisons between observations and between categories? Do the categories cover a wide range of empirical observations? Are there strong logical links between the gathered data and your argument and analysis? Have your research provided enough evidence for your claims to allow the reader to form an independent assessment-and agree with your claims? | Fieldwork lasting 18 months meant prolonged contact and engagement with family participants. Conducting series of interviews allowed the researcher to gain comprehensive understanding, as well as, to confirm data through the account of the different members that took active part in the study. Substantial interview data over 18 months provided thick descriptions. Member checking through repeated interviews and checking of themes on subsequent visits. Constant comparative analysis procedures, examining and comparing each piece of data with other related piece of data, and the concepts, ideas, and categories emerging. Comparisons between participant’s accounts both across the successive interviews with the same families and between different ones. Reflexive journal kept throughout the study. Memo writing specific to data collection and analysis. Peer debriefing with supervision team and advisory group. |
| Originality Are your categories fresh? Do they offer new insights? Does your analysis provide a new conceptual rendering of the data? What is the social and theoretical significance of this work? How does your grounded theory challenge, extend, or refine current ideas, concepts, and practices? | The study was novel since there was little prior knowledge about the experience of the whole family unit of living with AD at the time the study commence. Discussion on the resonance with prior models was conducted but extending and applied to different context not only culturally but in terms of the unit of study (i.e., the family) |
| Resonance Do the categories portray the fullness of the studied experience? Have you revealed both liminal and unstable taken-for-granted meanings? Have you drawn links between larger collectives or institutions and individual lives, when the data so indicate? Does your grounded theory make sense to your participants or people who share their circumstances? Does your analysis offer them deeper insights about their lives and worlds? | Ensuring data saturation through theoretical sampling and by verifying the completeness of the findings and the emerging model through member checking with the family participants as well as with other family caregivers. Participant’s feedback suggested the study findings helped to discover a number of barely perceptible and taken for granted meanings of their experiences. Family’s account raised diverse issues regarding health and social care they received, drawing implications. Coconstruction of findings between participants and the researcher. Participant’s feedback and verification of the final theoretical model. |
| Usefulness Does your analysis offer interpretations that people can use in their everyday worlds? Do your analytic categories suggest any generic processes? If so, have you examined these generic processes for tacit implications? Can the analysis spark further research in other substantive areas? How does your work contribute to knowledge? | Study findings were confirmed as useful by the study families and the other caregivers during member checking. “Generic” processes were identified and might be transferred to diverse caring circumstances. |
Criteria for Grounded Theory Studies (Charmaz, 2006; p. 182–183)
| Criteria | How this study met the criteria |
|---|---|
| Credibility Has your research achieved intimate familiarity with the setting or topic? Are the data sufficient to merit your claims? Have you made systematic comparisons between observations and between categories? Do the categories cover a wide range of empirical observations? Are there strong logical links between the gathered data and your argument and analysis? Have your research provided enough evidence for your claims to allow the reader to form an independent assessment-and agree with your claims? | Fieldwork lasting 18 months meant prolonged contact and engagement with family participants. Conducting series of interviews allowed the researcher to gain comprehensive understanding, as well as, to confirm data through the account of the different members that took active part in the study. Substantial interview data over 18 months provided thick descriptions. Member checking through repeated interviews and checking of themes on subsequent visits. Constant comparative analysis procedures, examining and comparing each piece of data with other related piece of data, and the concepts, ideas, and categories emerging. Comparisons between participant’s accounts both across the successive interviews with the same families and between different ones. Reflexive journal kept throughout the study. Memo writing specific to data collection and analysis. Peer debriefing with supervision team and advisory group. |
| Originality Are your categories fresh? Do they offer new insights? Does your analysis provide a new conceptual rendering of the data? What is the social and theoretical significance of this work? How does your grounded theory challenge, extend, or refine current ideas, concepts, and practices? | The study was novel since there was little prior knowledge about the experience of the whole family unit of living with AD at the time the study commence. Discussion on the resonance with prior models was conducted but extending and applied to different context not only culturally but in terms of the unit of study (i.e., the family) |
| Resonance Do the categories portray the fullness of the studied experience? Have you revealed both liminal and unstable taken-for-granted meanings? Have you drawn links between larger collectives or institutions and individual lives, when the data so indicate? Does your grounded theory make sense to your participants or people who share their circumstances? Does your analysis offer them deeper insights about their lives and worlds? | Ensuring data saturation through theoretical sampling and by verifying the completeness of the findings and the emerging model through member checking with the family participants as well as with other family caregivers. Participant’s feedback suggested the study findings helped to discover a number of barely perceptible and taken for granted meanings of their experiences. Family’s account raised diverse issues regarding health and social care they received, drawing implications. Coconstruction of findings between participants and the researcher. Participant’s feedback and verification of the final theoretical model. |
| Usefulness Does your analysis offer interpretations that people can use in their everyday worlds? Do your analytic categories suggest any generic processes? If so, have you examined these generic processes for tacit implications? Can the analysis spark further research in other substantive areas? How does your work contribute to knowledge? | Study findings were confirmed as useful by the study families and the other caregivers during member checking. “Generic” processes were identified and might be transferred to diverse caring circumstances. |
| Criteria | How this study met the criteria |
|---|---|
| Credibility Has your research achieved intimate familiarity with the setting or topic? Are the data sufficient to merit your claims? Have you made systematic comparisons between observations and between categories? Do the categories cover a wide range of empirical observations? Are there strong logical links between the gathered data and your argument and analysis? Have your research provided enough evidence for your claims to allow the reader to form an independent assessment-and agree with your claims? | Fieldwork lasting 18 months meant prolonged contact and engagement with family participants. Conducting series of interviews allowed the researcher to gain comprehensive understanding, as well as, to confirm data through the account of the different members that took active part in the study. Substantial interview data over 18 months provided thick descriptions. Member checking through repeated interviews and checking of themes on subsequent visits. Constant comparative analysis procedures, examining and comparing each piece of data with other related piece of data, and the concepts, ideas, and categories emerging. Comparisons between participant’s accounts both across the successive interviews with the same families and between different ones. Reflexive journal kept throughout the study. Memo writing specific to data collection and analysis. Peer debriefing with supervision team and advisory group. |
| Originality Are your categories fresh? Do they offer new insights? Does your analysis provide a new conceptual rendering of the data? What is the social and theoretical significance of this work? How does your grounded theory challenge, extend, or refine current ideas, concepts, and practices? | The study was novel since there was little prior knowledge about the experience of the whole family unit of living with AD at the time the study commence. Discussion on the resonance with prior models was conducted but extending and applied to different context not only culturally but in terms of the unit of study (i.e., the family) |
| Resonance Do the categories portray the fullness of the studied experience? Have you revealed both liminal and unstable taken-for-granted meanings? Have you drawn links between larger collectives or institutions and individual lives, when the data so indicate? Does your grounded theory make sense to your participants or people who share their circumstances? Does your analysis offer them deeper insights about their lives and worlds? | Ensuring data saturation through theoretical sampling and by verifying the completeness of the findings and the emerging model through member checking with the family participants as well as with other family caregivers. Participant’s feedback suggested the study findings helped to discover a number of barely perceptible and taken for granted meanings of their experiences. Family’s account raised diverse issues regarding health and social care they received, drawing implications. Coconstruction of findings between participants and the researcher. Participant’s feedback and verification of the final theoretical model. |
| Usefulness Does your analysis offer interpretations that people can use in their everyday worlds? Do your analytic categories suggest any generic processes? If so, have you examined these generic processes for tacit implications? Can the analysis spark further research in other substantive areas? How does your work contribute to knowledge? | Study findings were confirmed as useful by the study families and the other caregivers during member checking. “Generic” processes were identified and might be transferred to diverse caring circumstances. |
Results
Sample Description
A total of seven family units (22 participants) living with early stage AD participated in this study. Participants with AD varied by gender, age, socioeconomic status, housing, cognitive assessment, and time from diagnosis confirmation. Families were also diverse, as can be seen in Table 4. Characteristics of family caregivers involved in the focus groups are also presented in Table 5. The number of adult children as caregivers was significantly higher in the study sample than might be the case elesewhere, possibly reflecting the Mediterranean model of care in which intergenerational solidarity is a social norm shared by society as a whole. In Spain, it is estimated that about 57% of caregivers of frail older adults are adult children and 16% are spouses (IMSERSO, 2005).
Sociodemographic Characteristics of Study Participants
| Mean | Range | N (%) | |
|---|---|---|---|
| Person with AD (N = 7) | |||
| Age | 76.6 | (72–85) | |
| Female | 5 (71.4) | ||
| Education | |||
| Elementary school | 4 (57.1) | ||
| High school | 2 (28.6) | ||
| College (University) | 1 (14.3) | ||
| Housing | |||
| Rural area | 2 (28.6) | ||
| Urban area | 5 (71.4) | ||
| Living | |||
| Alone | 3 (42.9) | ||
| With partner | 3 (42.9) | ||
| With children | 1 (14.3) | ||
| MMSE | 20.1 | (18–23)a | |
| AD Dxb | |||
| <6 months | 3 (42.9) | ||
| 6 months to 1 year | 4 (57.1) | ||
| Relatives (N = 15) | |||
| Relationship to PwAD | |||
| Spouse | 2 (13.3) | ||
| Adult child | 12 (80) | ||
| Others | 1 (6.7) | ||
| Age | 50.9 | (38–79) | |
| Female | 13 (86.7) | ||
| Education | |||
| Elementary school | 9 (60) | ||
| High school | 2 (13.3) | ||
| College (University) | 4 (26.7) | ||
| Ocuppation | |||
| Unemployed | 6 (40) | ||
| Employed | 6 (40) | ||
| Retired | 3 (20) |
| Mean | Range | N (%) | |
|---|---|---|---|
| Person with AD (N = 7) | |||
| Age | 76.6 | (72–85) | |
| Female | 5 (71.4) | ||
| Education | |||
| Elementary school | 4 (57.1) | ||
| High school | 2 (28.6) | ||
| College (University) | 1 (14.3) | ||
| Housing | |||
| Rural area | 2 (28.6) | ||
| Urban area | 5 (71.4) | ||
| Living | |||
| Alone | 3 (42.9) | ||
| With partner | 3 (42.9) | ||
| With children | 1 (14.3) | ||
| MMSE | 20.1 | (18–23)a | |
| AD Dxb | |||
| <6 months | 3 (42.9) | ||
| 6 months to 1 year | 4 (57.1) | ||
| Relatives (N = 15) | |||
| Relationship to PwAD | |||
| Spouse | 2 (13.3) | ||
| Adult child | 12 (80) | ||
| Others | 1 (6.7) | ||
| Age | 50.9 | (38–79) | |
| Female | 13 (86.7) | ||
| Education | |||
| Elementary school | 9 (60) | ||
| High school | 2 (13.3) | ||
| College (University) | 4 (26.7) | ||
| Ocuppation | |||
| Unemployed | 6 (40) | ||
| Employed | 6 (40) | ||
| Retired | 3 (20) |
Note: AD = Alzheimer’s disease; MMSE = Mini-Mental State Examination.
aMild cognitive impairment. bTime with AD diagnosis at the point of study entry.
Sociodemographic Characteristics of Study Participants
| Mean | Range | N (%) | |
|---|---|---|---|
| Person with AD (N = 7) | |||
| Age | 76.6 | (72–85) | |
| Female | 5 (71.4) | ||
| Education | |||
| Elementary school | 4 (57.1) | ||
| High school | 2 (28.6) | ||
| College (University) | 1 (14.3) | ||
| Housing | |||
| Rural area | 2 (28.6) | ||
| Urban area | 5 (71.4) | ||
| Living | |||
| Alone | 3 (42.9) | ||
| With partner | 3 (42.9) | ||
| With children | 1 (14.3) | ||
| MMSE | 20.1 | (18–23)a | |
| AD Dxb | |||
| <6 months | 3 (42.9) | ||
| 6 months to 1 year | 4 (57.1) | ||
| Relatives (N = 15) | |||
| Relationship to PwAD | |||
| Spouse | 2 (13.3) | ||
| Adult child | 12 (80) | ||
| Others | 1 (6.7) | ||
| Age | 50.9 | (38–79) | |
| Female | 13 (86.7) | ||
| Education | |||
| Elementary school | 9 (60) | ||
| High school | 2 (13.3) | ||
| College (University) | 4 (26.7) | ||
| Ocuppation | |||
| Unemployed | 6 (40) | ||
| Employed | 6 (40) | ||
| Retired | 3 (20) |
| Mean | Range | N (%) | |
|---|---|---|---|
| Person with AD (N = 7) | |||
| Age | 76.6 | (72–85) | |
| Female | 5 (71.4) | ||
| Education | |||
| Elementary school | 4 (57.1) | ||
| High school | 2 (28.6) | ||
| College (University) | 1 (14.3) | ||
| Housing | |||
| Rural area | 2 (28.6) | ||
| Urban area | 5 (71.4) | ||
| Living | |||
| Alone | 3 (42.9) | ||
| With partner | 3 (42.9) | ||
| With children | 1 (14.3) | ||
| MMSE | 20.1 | (18–23)a | |
| AD Dxb | |||
| <6 months | 3 (42.9) | ||
| 6 months to 1 year | 4 (57.1) | ||
| Relatives (N = 15) | |||
| Relationship to PwAD | |||
| Spouse | 2 (13.3) | ||
| Adult child | 12 (80) | ||
| Others | 1 (6.7) | ||
| Age | 50.9 | (38–79) | |
| Female | 13 (86.7) | ||
| Education | |||
| Elementary school | 9 (60) | ||
| High school | 2 (13.3) | ||
| College (University) | 4 (26.7) | ||
| Ocuppation | |||
| Unemployed | 6 (40) | ||
| Employed | 6 (40) | ||
| Retired | 3 (20) |
Note: AD = Alzheimer’s disease; MMSE = Mini-Mental State Examination.
aMild cognitive impairment. bTime with AD diagnosis at the point of study entry.
Sociodemographic Characteristics of Family Caregivers Participating in the Focus Groups
| Mean | Range | N (%) | |
|---|---|---|---|
| Relatives (N = 14) | |||
| Relationship to PwAD | |||
| Spouse | 2 (14.3) | ||
| Adult child | 12 (85.7) | ||
| Age | 50.8 | 33–75 | |
| Female | 12 (85.7) | ||
| Education | |||
| Elementary school | 2 (14.3) | ||
| High school | 3 (21.4) | ||
| College (University) | 4 (28.6) | ||
| Job training | 5 (35.7) | ||
| Ocuppation | |||
| Unemployed | 3 (21.4) | ||
| Employed | 8 (57.1) | ||
| Retired | 2 (14.3) | ||
| Occupational disability | 1 (7.1) | ||
| Housing | |||
| Rural area | 10 (71.4) | ||
| Urban area | 4 (28.6) | ||
| Frecuency of PwAD contact | |||
| Living with PwAD | 8 (57.1) | ||
| Daily visit | 1 (7.1) | ||
| Regular visit | 5 (35.7) | ||
| Years living with AD | |||
| 3–5 | 9 (64.3) | ||
| 6–8 | 5 (35.7) |
| Mean | Range | N (%) | |
|---|---|---|---|
| Relatives (N = 14) | |||
| Relationship to PwAD | |||
| Spouse | 2 (14.3) | ||
| Adult child | 12 (85.7) | ||
| Age | 50.8 | 33–75 | |
| Female | 12 (85.7) | ||
| Education | |||
| Elementary school | 2 (14.3) | ||
| High school | 3 (21.4) | ||
| College (University) | 4 (28.6) | ||
| Job training | 5 (35.7) | ||
| Ocuppation | |||
| Unemployed | 3 (21.4) | ||
| Employed | 8 (57.1) | ||
| Retired | 2 (14.3) | ||
| Occupational disability | 1 (7.1) | ||
| Housing | |||
| Rural area | 10 (71.4) | ||
| Urban area | 4 (28.6) | ||
| Frecuency of PwAD contact | |||
| Living with PwAD | 8 (57.1) | ||
| Daily visit | 1 (7.1) | ||
| Regular visit | 5 (35.7) | ||
| Years living with AD | |||
| 3–5 | 9 (64.3) | ||
| 6–8 | 5 (35.7) |
Note: AD = Alzheimer’s disease.
Sociodemographic Characteristics of Family Caregivers Participating in the Focus Groups
| Mean | Range | N (%) | |
|---|---|---|---|
| Relatives (N = 14) | |||
| Relationship to PwAD | |||
| Spouse | 2 (14.3) | ||
| Adult child | 12 (85.7) | ||
| Age | 50.8 | 33–75 | |
| Female | 12 (85.7) | ||
| Education | |||
| Elementary school | 2 (14.3) | ||
| High school | 3 (21.4) | ||
| College (University) | 4 (28.6) | ||
| Job training | 5 (35.7) | ||
| Ocuppation | |||
| Unemployed | 3 (21.4) | ||
| Employed | 8 (57.1) | ||
| Retired | 2 (14.3) | ||
| Occupational disability | 1 (7.1) | ||
| Housing | |||
| Rural area | 10 (71.4) | ||
| Urban area | 4 (28.6) | ||
| Frecuency of PwAD contact | |||
| Living with PwAD | 8 (57.1) | ||
| Daily visit | 1 (7.1) | ||
| Regular visit | 5 (35.7) | ||
| Years living with AD | |||
| 3–5 | 9 (64.3) | ||
| 6–8 | 5 (35.7) |
| Mean | Range | N (%) | |
|---|---|---|---|
| Relatives (N = 14) | |||
| Relationship to PwAD | |||
| Spouse | 2 (14.3) | ||
| Adult child | 12 (85.7) | ||
| Age | 50.8 | 33–75 | |
| Female | 12 (85.7) | ||
| Education | |||
| Elementary school | 2 (14.3) | ||
| High school | 3 (21.4) | ||
| College (University) | 4 (28.6) | ||
| Job training | 5 (35.7) | ||
| Ocuppation | |||
| Unemployed | 3 (21.4) | ||
| Employed | 8 (57.1) | ||
| Retired | 2 (14.3) | ||
| Occupational disability | 1 (7.1) | ||
| Housing | |||
| Rural area | 10 (71.4) | ||
| Urban area | 4 (28.6) | ||
| Frecuency of PwAD contact | |||
| Living with PwAD | 8 (57.1) | ||
| Daily visit | 1 (7.1) | ||
| Regular visit | 5 (35.7) | ||
| Years living with AD | |||
| 3–5 | 9 (64.3) | ||
| 6–8 | 5 (35.7) |
Note: AD = Alzheimer’s disease.
Theory
A three-stage theory of the subjective experience of families living with early stage AD was developed. It captures how families worked to preserve and/or maintain balance between their new role as caring families and life before the onset of AD (Figure 1). Each of the three stages was underpinned by key social processes that shaped the family experience over time reinforcing the evolutionary and dynamic nature of living with AD.
Keeping things in balance: a three-stage theory of the subjective experience of families living with (early stage) Alzheimer’s disease.
What’s Going on Here?
Stage 1, what’s going on here, comprises the social process of noticing, suspecting, and confirming and captures the families’ growing awareness that something was not quite right with the person with (potential) AD.
The initial process of noticing changed over time as reactions to the “unusual” behavior by the older family member evolved. Initially, the usual response was to try and “justify” apparently “odd” events within a normal frame of reference. For example, unexpected behaviors were attributed to recent life events, such as a death in the family, increased demands on a person’s time and energy, or even considered as a “normal” part of the ageing process until something that challenged this belief occurred, as a daughter below explains:
Elisa: My sister in law had already told me: “listen, your mother dotes a little, doesn’t she?” But I didn’t care about that. I said to her “I don’t care, she is getting older.” But, one day I was having lunch with mum and she referred to me as if I were her sister, her sister! That scared me a lot. That made me think that was not a normal forgetfulness and that something had happened to mum. (The Estevez family)
As the uncommon episodes increased in severity and frequency, or new behaviors emerged, it became increasingly difficult for relatives to justify them and so their initial “vague” suspicions began to shift to a perception that something was definitely “wrong.”
The period between first noticing and becoming more suspicious was often lengthy, in part due to the “hiding” actions performed by the person with (potential) AD and their spouses who sought to hide behaviors from their children, as described below:
Cecilia: We realized our father did not tell us everything as he lived with mum. He might tell us one-thing in-a-thousand. Then, of course, we did not live with them… If you don’t see them every day you may notice nothing. (The Cervera family)
Nevertheless, once noticing became more common (and if family communication was good) suspicions began to be shared. But again, this process still often took a considerable time, especially if various members of the family did not agree.
David: This took long time. My cousin and I noticed that my mother was not alright. But my sister said she was okay and nothing had happened to her. We went on like this about 4 years. (The Dominguez family)
Indeed people who recognized odd behaviors and tried to share their concerns with siblings were often “written off” by those did not acknowledge such changes (“what are you talking about? Nothing is happening to mom;” “mom is perfect, those things are made up by you;” “you’re a little loopy”).
Unfortunately, seeking expert opinion to “confirm” the seriousness of what relatives were seeing did not always mean reaching a timely diagnosis. For the majority of the families interviewed, the process of obtaining a diagnosis was a complex and prolonged one and was characterized by a lack of information and limited support.
Jimena: We’ve been dealing with this issue for about three years. We went to the neurologist and he said: “well, there’s nothing at all wrong with your mother. It’s a matter of ageing.” (The Jimenez family)
Ilda: I think some families quickly noticed it, but healthcare professionals refused to tell them the diagnosis (…). We all know that in the healthcare system there are certain words that sound terrifying, Al-zhei-mer, can-cer. (Focus Group 1)
Our Life Is Changing
Stage 2, our life is changing, was underpinned by two processes termed watching and redefining.
As the condition progressed, families noticed on-going physical, psychological, and social changes in their relatives and they adopted a more vigilant attitude, observing the pwAD closely and keeping an eye on his/her activities and behaviors. Thus, the noticing process was not confined to Stage 1 alone but rather continued throughout the family journey, although here it took a more active form that was labeled watching. This process was often discrete to prevent the pwAD to be aware of it.
Adela: Now my mum keeps an eye on dad. She is always alert. Anytime he goes out she makes sure that he’s taken his wallet, the keys, some money… she controls everything.
Anne: Yeah… I control everything. I feel a bit anxious. (The Armendariz family)
The above quote suggests that while the family were actively caring this did not involve direct “hands-on” activity. Nevertheless, this was still a stressful period:
Maria: It was as if your heart would escape though your mouth!
Marisa: When I was at work, you know how many times I called my mum? Hundreds! And if she did not answer the phone I took my car and flew home! (Focus Group 3)
Adopting this, watching brief was not a simple task both because of its secretive nature and because many pwAD wanted to maintain their usual routines. However, over time it was impossible for the family to maintain a distant watching role and it gradually became a more overt activity that was difficult to keep from the affected person. Not surprisingly, some pwAD did not appreciate being watched and regarded it as being rather oppressive:
Justina: I often scold my daughters. They are always saying: “mum this, mum that. Get dressed in these clothes mum.” They decide about my clothes, the food I eat, and everything. I usually tell them: “Leave me alone girls! You don’t let me breathe!” (The Jimenez family)
This perceived overprotection by the family tended to increase the hiding behaviors of some people with AD. As a result, the family redoubled their watching efforts and the potential for a “vicious” circle emerged.
As families recounted their experiences, it was clear that as the condition progressed a turning point in their lives occurred. This, for most, entailed a fundamental shift in the meaning, purpose, and direction of their lives which challenged established ways of family functioning and compelled its members to consider their priorities.
Anne: This changes your life!
Adela: Things evolve and if there is such an alteration it can change everything (The Armendariz family)
How families redefined certain aspects of their life was influenced by many factors, such as family background, family structure, previous ways of working, and particular characteristics of the family and each of its members.
For instance, when redefining roles and responsibilities, in families where the couple still lived together, the spouse of the pwAD tended to gradually assume the roles and responsibilities that had been their partner’s before the onset of AD, often in addition to other caregiving responsibilities. In these circumstances, the rest of the family (primarily children) played a more supportive role and helped the spouse in taking on those new responsibilities.
Cecilia: Now my father is the one who is alright and the one who cares for my mother. We have children, we have our own lives. Although we try to help them as much as we can. (The Cervera family)
By contrast, in families where there was no partner, children and significant others had to decide how new roles and responsibilities were to be divided and shared within the family. This was the case of the Estevez Family in which six members shared care for their mother with AD. This was challenging but could be resolved by open discussion.
Elisa: My God! Organizing things with my brothers was a big deal!(…) we sat all together and discussed how to handle this situation. Now I take care of mum from Monday to Thursday and my sister organizes the rest of siblings to come alternate weekends. (The Estevez family)
In some instances, reaching agreement about organizing care was more difficult and could result in family conflict and low levels of satisfaction.
Jimena: Organizing care among us has been terrible. We just fight instead of working together to deal with this. I think we need to talk and see how each one can contribute to this, because this is getting worse and we just argue with each other. (The Jimenez family)
Changing roles did not only affect those members of the family that assumed new responsibilities but also the pwAD who often gave up the roles and responsibilities that had always been his/hers.
Jimena: Roles have changed and this has been difficult for both sides. First for mum, who has always been in charge of everything. This has been a huge change. Besides, she does not accept all our help
Justina: If I can do it myself, why should I need your help? (The Jimenez family)
By contrast, for families in which the pwAD did not have a prominent role in the family redefining roles seemed less painful.
What was clear is that for some families caregiving was a unifying force and served to improve family relationships while for others constant disagreements about care altered family relationships for the worse. The following dialogue, between different daughters who participated in the third focus group, captures the impact on living with AD on various families:
Maddi: So far our relationship hasn’t changed. I think we all agree that we have to work together. Obviously we have problems but we always try to come to terms.
Marta: Before there was little contact between us but now there is none. I have little contact with my sister. We only argue with each other. I have no problem with my two brothers but…only three of us agree about this issue.
Maria: Before we had lot of problems in the family, largely due to my mum’s personality (…) Now I regard this condition as “the disease of love.” This is a condition that my family and me welcomed as something marvellous, such a blessing! This has brought all of us together.
Addressing the impact of AD over time was another key challenge families faced. They had to balance the practical and emotional dimensions of living “day-to-day” while planning for an uncertain future, involving anticipatory questions such as “what comes next?” This could deplete them of the energy they needed to plan for the future in a proactive fashion and inhibit how they dealt with present challenges.
David: My mum is currently alright but I notice that she is gradually getting worse. Then I wonder how far things will go… I know I am anticipating events but I worry about everything, how this will affect her, how this will affect me, how I am supposed to handle this alone if my sister doesn’t help me. (The Dominguez family)
Conversely, other families were able to put the (uncertain) future into perspective and to remain positive and hopeful rather than being fearful. Such families were more likely to adopt a proactive attitude and to concentrate their efforts on doing their best day-to-day. Family dynamics played a key role in shaping these perceptions.
Anne: We think day-to-day. We deal with things as they come. Otherwise if were always thinking “what if this happens or that happens?” We couldn’t live our lives! (The Armendariz family)
Clearly, the way in which families redefined their everyday life did not follow a set pattern and what worked well for one would not necessarily be useful to another. However, it was clear that some families managed this redefining more successfully than others and this influenced how the family were able to keep things together.
Keeping Things Together
The third stage, keeping things together, revolved around the basic social process of balancing. All families, to a greater or lesser extent, wanted to try and keep things together in the face of the constantly evolving challenges they faced. In doing so, families tried to simultaneously focus on providing the best care for their relative while at the same time preserving the personal, social, and working life of the family. This meant constantly adapting to changing daily events. Some families were able to do so more effectively than others who began to “fall apart.”
Those families who achieved care-family balance maintained a positive relationship between caring and family life, with both activities being viewed as compatible and in balance with each other. These families were able to respond positively to living with AD and to gain satisfaction from caring. Being close, having a high level of commitment to the family and finding meaning in their experience were key to achieving this balance.
Adela: We try to continue with our lives as much as we can. I come every afternoon to stay with my parents. I pick up my kids from the school and come here. I organize my day around being with my kids, helping them doing their homework… I try to keep my life with in order and take care of them (my parents) as well. (The Armendariz family)
Living in care-family conflict, by contrast, occurred when, either implicitly or explicitly, families regarded caring and family life as incompatible and competing for time, energy, and resources. Where families believed that caring was dominating their lives and reduced their freedoms achieving a balance proved elusive and conflict arose. Such families often had poor prior relationships and saw caring as a duty which provoked ambivalent feelings and spilled over into other aspects of life.
Blanca: I feel that this is constraining my life, our lives! We have our families. I have children, I have a family… How am I supposed to look after them too? (The Blasco family)
Such families struggled to “get on with life” outside of caring and they often had to give up personal projects, seeing caring as an “inescapable” responsibility.
Consequently, keeping things together depended on families being able to agree how to adapt to their newly (re)defined family situation. For those who struggled to do so appropriate outside support would have been much valued but this was often not received and indeed early contact with formal support systems was often conflicted. Therefore, families usually went through the early and later caring experience alone and “feeling abandoned.” Unfortunately, for most, it was a feeling that prevailed throughout their caring experience:
Laura (daughter): You have to get by.
Lucas (husband): They (professionals) leave us in God’s hand.
Lisa (daughter): We feel abandoned. We were alone at the beginning, at the end, and in the middle.
Leo (husband): We need someone to guide us. We need guidance. We were completely lost (at the start), “what is coming over me, my God!” We needed support at that time.
Laura (daughter): In the public health care system there is nothing. Where can we go? (Focus Group 2)
Many families acknowledged that what hurt the most was the lack of professional interest in helping them to understand and live with the condition. For most, no effort had been made to explain what the future might hold nor were they given any advice about the impact that the condition might have on their lives.
Jimena: I was coming here with the idea of asking for help, such as where can we go to get more information about the condition and someone help to us? Because we had no information and we do not know how to manage our conflicts… I think we all need professional help. (The Jimenez family)
The lack of support given to the whole family and especially in helping them to redefine family life meant that families felt totally alone. When families were asked about what could have helped them at a given point they often said that rather than disease specific or practical advice they would have preferred help with negotiating care within the family.
Gema: If someone could advise us… I mean, someone to ask how we feel, how we are doing… someone who tells us what might happen to our family. I feel like we all are sick; actually it is not just my father who is sick; it is all of us. (The Gonzalez family)
Discussion
The results of this study provide valuable insights into what takes place in the family during the early stages of the AD experience with implications for the support of the family over time. Adopting a family systems approach permitted a more nuanced understanding of the impact of AD on the family dynamics and working over time. The resulting theory helps to illuminate how families who are confronted with AD respond to the demands they faced in a way that extends the existing literature.
The first stage of the theory, what’s going on here, and particularly the process of noticing, closely parallels the work of Keady (1999), exploring the dynamics of dementia. As with this author’s work noticing described the process by which the family became aware that something was “not quite right.” In the present study, participants responded to this in a number of ways, comprising activities such as justifying, disagreeing, and hiding. The concept of justifying resonates with the idea of “normalizing” suggested by Keady. Similarly, hiding was also identified by Keady’s (1999) study, when the person with dementia hid their difficulties from others. In the present study, hiding was also employed by relatives trying to avoid worry for other family members. This highlights the importance of exploring wider family dynamics as they extend understanding beyond a dyadic context.
Building on the work of Keady (1999), our data elaborated on the notion of noticing as a recurrent process that occurs throughout caring rather than being confined to the early stage. The nature of what was noticed by families evolved over time as the largely passive act of noticing took a more active form as watching.
The importance of such “invisible” dimension of family care, such as watching, reinforces Bowers (1987) work and resonates with her differing types of care such as preventive, protective, and supervisory care. However, this study enhances understanding of the reciprocal dimensions of the caregiving relationship that Bowers did not explore by, for example, providing insights into how the pwAD responds to supervisory care. In many cases, the pwAD sought to live a relatively independent life and wanted to maintain their usual routines and felt that being watched was an imposition. Maintaining a balance between watching and limiting perceived control resulted in difficulties for many families. Excessive control served to constrain and disempower pwAD whereas watching was important for the carer’s peace of mind.
The anticipatory aspects of care described by Bowers (1987) and later by Nolan et al. (1996) also figured in this study, particularly in relation to “looking at future.” This study illustrated how some families tended to adopt a day-to-day approach and did not think too far ahead, just as described by Hellström et al. (2007), whereas other families tended to dwell on the future and played out a range of possible scenarios. The latter approach engendered greater stress and with families engaging in the type of “speculative anticipation” described by Nolan et al. (1996) as occurring when relatives had little information as opposed to “informed anticipation” which occurred when families had adequate advice, information, and support. In the present study, most families tended to “over-anticipate” the future and therefore “lived in fear” rather than enjoying the present. Again, this is an area where appropriate help and support could do much to improve matters.
The redefining process adopted by those families who adapted well was consistent with Canga’s (2011) idea of “negotiating conflicting feelings.” The tensions and challenges between maintaining family balance and redefining how the family worked when facing AD occurred in all families. In some cases, these challenges were resolved, bringing the family closer together, while in other instances, families did not know how to resolve either the problems they perceived themselves to face or their reactions to them. These two outcomes mirror the “good life together” and “disconnectedness” described by La Fontaine and Oyebode (2014), in their synthesis of qualitative studies on family relationships and dementia. For these authors, dementia is seen as a challenge to be managed together, consistent with Canga’s (2011) notion of “Sustaining Caring Family;” achieved by families who are able to care for their relatives while continuing with their lives. As with those families in the present study who found a balance, Canga’s families drew on family strengths and used their shared resources to achieve the balance required. La Fontaine and Oyebode (2014) distinguish this from the “working apart” experience as described by Keady and Nolan (2003). Again, this is consistent with the family-care conflict dynamic in this study which leads to feelings of “entrapment” (La Fontaine & Oyebode, 2014) as described by a number of participants in the study.
The three-stage theory and associated processes developed in this study reinforce the evolutionary and dynamic experiences of families living with AD, highlighting that family care is not a static commitment but an active process that varies over time. Temporal models of care, particularly in dementia, have already been developed (see for example Bowers, 1987; Keady & Nolan, 1994) but these did not adopt an explicitly family-centered approach. More recently, a number of studies have focused on “couplehood” in dementia (Hellström et al., 2007) and while these have looked more closely at the experience of living with AD, this has been from a dyadic perspective.
In contrast, the theory presented here emerged from data gathered using a family system approach that sought to include the accounts of various members of the family, not only the main caregiver and the pwAD. This approach provided valuable insights into the interactions that occurred among different members that could not have been captured if only individual interviews were conducted. This theoretical understanding, therefore, represents a starting point for a different approach to comprehending how families live with AD and the need for professional support.
Although exploring such support was not an original goal of the study, the over-riding theme that emerged across all the three stages of the theory, feeling abandoned, captured the experiences that families had in their contact (or more accurately, lack of contact) with professional services at different stages of the process. The need to counter this perception of feeling abandoned calls into question the whole approach to supporting frail older people (especially with AD) and those who provide them with the majority of the help that they need; the family (McCabe, You, & Tatangelo, 2016; Moon, 2017).
The three-stage theory outlined here provides a framework for professional assessment and intervention by facilitating the understanding of the processes that take place in the family while living with early stage AD. It is argued that services should be “stage-specific,” tailored to varying need over time. Despite each family situation being unique, there are broad stages and processes which may help predict the occurrence of certain types of needs. These can guide the way care is planned and delivered. For example,
The general dissatisfaction families reported in obtaining the diagnosis suggests that improving the timeliness of diagnosis is an important objective for health care providers in the Spanish context. Traditional models of assessment are often too ritualistic and narrow, focusing on concrete symptoms and problems rather than the personal and family experiences which are often overlooked or dismissed.
Much more needs to be done to make people aware of the signs and symptoms of AD; so, they can seek help and get access to timely diagnosis, treatment, and support. The study findings suggest that activities such as justifying, hiding, and disagreeing may contribute to delay in getting the diagnosis. Families sometimes wait too long before going to the doctor and when they do their concerns are not considered fully. Improving understanding and awareness of the AD family experience among health care professionals, families, and general population may help to address such delays and promote better mutual understanding among all the parties involved (formal and informal).
Data suggested that families are left to get on with it after they received the diagnosis, rather than being helped to plan proactively. A more comprehensive approach needs to be adopted, such as that discussed above in which the focus moves from individuals to the family as a whole.
Poor initial experience of services was mirrored throughout most of the early stages. No real help was provided to assist the family organize and redefine family life. Promoting a spirit of cooperation, open communication, and negotiation among family members is paramount to achieving this. Professional interventions that help families to be aware of and explore processes such as redefining and balancing may prevent family conflict and promote quality of life of the family unit.
Findings from the study evidenced that professional support is needed as early as possible in the AD’s journey, taking into account the family’s perception and understanding of the condition and the resources that they both have and need (McCabe et al., 2016). This, therefore, means making the family the unit of assessment and intervention in AD care. Professionals need to focus more on family interactions and relationships when living with AD and other long-term conditions (Moon, 2017).
Furthermore, if the family experience of AD is to be truly “transformed,” the relationship between health care professionals and families must be reconceptualized. This requires professionals be trained in family focused frameworks that promote mutual understanding both within the family and between families and services systems based on the exchange of expertise and values (Nolan, Davies, Ryan, & Keady, 2008). Fostering partnerships provides for a context of caring in which family can seize possibilities for enhancing the continuation of a meaningful family life project.
Limitations
A range of challenges to accessing and interviewing the “whole” family was identified including internal family dynamics, geographical distribution of family members, and ethical concerns about coercion or privacy. Therefore, interviewing all of the members involved in the AD experience was not always possible and inevitably participation by family members varied. However, ensuring the interviews focused primarily on the relationships, interactions, and dynamics of the group, regardless the number of family members included, helped to ensure, as far as was possible, that a family orientation remained prominent.
Another challenge of a study of this nature is around the use of the word “Alzheimer” and the effect this might have on the types of discussion that are possible. Rather the term “memory loss” was used. However, this also has limitations as it places emphasis on only one aspect of living with the condition and may unwittingly result in a rather narrow perspective emerging. Lastly, the study was also confined to the services provided in only one city-in the Navarra region of Spain, possibly precluding claims of generalizability. However, findings of this study, through not generalizable in the traditional sense, may be applied to other contexts of family care.
Acknowledgments
The authors gratefully acknowledge the families who participated in the study and the nursing staff of the Cognitive Training Unit at the San Francisco Javier Psychogeriatric Hospital for referring participants to the project. The authors would also like to thank their colleagues from the Chronic Diseases and End of Life Care Research Area at the Faculty of Nursing,University of Navarra who provided insight and expertise that greatly assisted the study.
Conflict of Interest
The authors declare no conflict of interest.
