ABSTRACT:

This critical qualitative research examined the processes by which persons with early stage Alzheimer’s disease and their family and formal caregivers navigated through and partnered with/in community dementia care services. This longitudinal study followed six persons with AD, their families and care providers over a period of 18 months. Interview and field note data were analyzed with a particular focus on examining those social interactions and organizational processes that shape the distribution of and access to community dementia care services. Identifying and addressing specific contextual factors within and between formal and familial care systems will ultimately lead to the development of an optimal, integrated community-based dementia care and service delivery.

PURPOSE:

The purpose of this grounded theory study was to understand the social interactions amongst those involved with community-based delivery of healthcare to persons with Alzheimer’s disease. This study focused on: the access, use, and delivery of community-based healthcare services as experienced by older adults with early clinical stage Alzheimer’s disease, their family caregivers, and care providers; the partnering experiences among older adults with Alzheimer's disease and their care partners in their access, use and delivery of dementia services; and the challenges and opportunities for refining system access and navigation approaches to enhance quality of community-based dementia care delivery.

METHODS:

The research design was informed by a constructivist grounded theory methodology (Charmaz, 2005) that focuses on the meanings people ascribe to relational processes, specifically, in this case, related to navigating and partnering with/in community dementia care services. Six 'clusters' of participants were followed over the course of 18 months. Each was comprised of a person with early-stage Alzheimer's disease, his/her family caregiver(s), and his/her formal caregivers. Cluster members typically participated in three in-depth interviews over the course of the study; the semi-structured interview protocol used to guide the interviews evolved in light of data analysis conducted concurrently with data collection.

SAMPLE: 

Six older adults with early-stage Alzheimer's disease were recruited to the study. Additionally, family caregivers (n = 12) and professional caregivers (n = 10) were recruited to participate. The six clusters of care recipients/families/care providers thus included four female and two male people with early staged Alzheimer's disease, one spouse, eleven adult children, one adult grandchild, three personal support workers, two social workers, one geriatrician, and two case managers. Each participated in one to four in-depth interviews. In total, 52 interviews were conducted. 

FINDINGS:

An emergent grounded theory, Navigating Community Based Care (see Figure 1), identified nine inter-connected processes across three realms:

1. Contemplating Action – In light of the family situation and as new information became available, study participants began to anticipate and/or decide upon the next steps.  Specifically, this realm is constituted by  two sub-processes, Anticipating and (Re)-Acting, wherein participants anticipate and/or decide upon strategies to remain living at home, with or without the support of family and/or formal caregivers.
   
   
2. Managing Care – Study participants used a variety of strategies to enact their unique care plan, and evaluated the care that was received/provided with a common goal in mind: for the person with dementia to remain living at home for as long as possible. Specifically, this realm is constituted by the four sub-processes: Planning Care, Making Decisions, Strategizing, and Evaluating. The first two sub-processes, Planning Care and Making Decisions, serve to select interim and end 'goals' and to coordinate action, while the latter two, Evaluating and Strategizing, work as processes in tandem to monitor the attainment of the care plan decided upon. 
   
   
3. Relating to Others – Study participants engaged with one another in order to provide care and make care work, often relying on the exchange of actionable information that, in turn, led to further Contemplation. The three sub-processes that comprise this realm include: Translating and Exchanging Knowledge, which speaks to the socialization of information and know-how between cluster members; Making Care Work, which signifies both the formal mechanisms and subjectively-located resiliency that manifest as caregiving relationships; and finally, Providing and Receiving Care, i.e., the combined efforts of people with dementia and their caregivers to ensure that activities of daily living are supported and meaningful.

IMPLICATIONS:

Featured in this emergent grounded theory is its assertion that 'navigating' community dementia care services is less about accessing Service A, then B, then C. Rather, the navigation occurs between and among these three realms such that together, people with dementia and their family AND formal caregivers are attuned and give credence to the care work that goes into Contemplation Action, Managing Care, and Relating to Others; successful partnering in such navigation confirms that indeed, relationships do matter, especially in dementia care.

Importantly, the concentration of activity or energy spent in each realm varied among and within families and among professional providers, sometimes as the result of the progression of the disease, and often as the result of any given family’s particular context. Study findings offer insights into how class, gender, and other socio-cultural factors intersect to shape the paths upon which families navigate and partner with community dementia care service providers.

As potential study implications, caregivers/providers are encouraged to:

• Rethink the process of navigation – it  takes place within contemplative, managerial, and relational realms of dementia care and these navigating processes are dynamic over time
• Value all care work  within the three realms
• Recognize the importance of building community dementia care capacity across all realms
• Develop strategies for partnering  within and between formal and familial care
• Address those contextual and conditioning  factors  that hinder/help quality dementia care

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