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Transitions in Dementia Care: Theoretical Support for Nursing Roles

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Karen M. Rose, PhD, RN
Ruth Palan Lopez, PhD, GNP-BC

Abstract

There are several predictable transitions in the course of dementia, and care is often provided by family members in the earlier stages. Later stages often include the move to one or more care settings. Important transitions for those with dementia and their families and/or caregivers include the initial diagnosis of dementia; advanced planning for financial concerns and healthcare considerations; driving cessation; managing behavioral symptoms; changes in settings; and preparing for end-of-life. Evidence has emerged to inform the important roles nurses may have in each of the transitions. In this article, we explore the concept of transitional care and how it relates to nursing care of older adults with Alzheimer’s disease and other dementias. We begin by briefly describing a middle-range theory of transitions. Next, we describe the dementia trajectory and provide evidence for expanding nursing roles in transitions. Also included are recommendations for research in the area of roles and transitional care.

Citation: Rose, K., Lopez, R., (May 31, 2012) "Transitions in Dementia Care: Theoretical Support for Nursing Roles" OJIN: The Online Journal of Issues in Nursing Vol. 17, No. 2, Manuscript 4.

DOI: 10.3912/OJIN.Vol17No02Man04

Key words: Transitions; transitional care; dementia; Alzheimer's disease; family caregivers; older adults; nurse role; theory; care planning; trajectory; palliative care; end-of-life care; middle-range theory

In 2010, the population 65 and older totaled 40.3 million (13% of the population). By 2030, the number of older persons is expected to increase to more than 72 million (20%) (U.S. Census Bureau, 2010). Approximately 1.3 million people 65 and older – or 3.1 percent of this population – lived in skilled-nursing facilities in 2010, where the costs of care are growing.

An estimated 5.4 million Americans of all ages had a diagnosis of Alzheimer’s disease (AD) in 2011. This figure includes 5.2 million people aged 65 and older (Hebert et al., 2003), and 200,000 individuals under age 65 who have younger-onset AD (Alzheimer's Association, 2006). Specifically, one in eight people aged 65 years and older have AD, the most common type of all dementias. For people with AD and other demen­tias, aggregate payments for health care, long-term care and hospice are projected to increase from $183 billion in 2011 to $1.1 trillion in 2050 (in 2011 dollars). (Alzheimer's Association, 2011).

...providing family caregivers with adequate supportive care, training, and anticipatory guidance along the trajectory of dementia is an important concern. The majority (80%) of care provided to those with dementia at home is provided by family caregivers, totaling 17 billion hours of unpaid care in 2010 (Alzheimer's Association, 2010). Providing care to a loved one with dementia can be detrimental to both physical and psychological health. Negative health outcomes for family caregivers of older adults with dementia, as compared to non-caregiving persons matched on age, included higher rates of sleep disturbances and depressive symptoms; poorer self-ratings of overall health status; and a 63% higher mortality rate (Martire & Hall, 2002; Schulz & Beach, 1999). Thus, providing family caregivers with adequate supportive care, training, and anticipatory guidance along the trajectory of dementia is an important concern.

In this article, we explore the concept of transitional care and how it relates to nursing care of older adults with Alzheimer’s disease and other dementias. We begin by describing a transition framework. Next, we explore the relevance of transitional care in the context of older adults with dementia, their family caregivers, and the roles for nurses in the context of providing transitional care. Finally, we conclude with recommended areas for additional clinical and research investigation in the area of transitional care.

Transitions: A Middle-Range Theory

Meleis’ (1986; 2000; 1994) middle-range theory of transitions provides a comprehensive view of transitions that may serve as a useful guide to designing anticipatory guidance interventions for older adults with dementia and family caregivers. According to Meleis (as cited in Swanson & Tripp-Reimer, 1999), a transition is “a passage between two relatively stable periods of time” (p. 2). During transitions, individuals move from “one life phase, situation, or status to another” (p.2). The theory posits that transitions are precipitated by significant marker events or turning points that require new patterns of response. These turning points prompt the recognition that “business is not as usual” and that new strategies are needed to cope with daily life experiences.

The Dementia Trajectory

There are several predictable transitions in the course of dementia. There are several predictable transitions in the course of dementia. The Global Deterioration Scale (GDS) (Reisberg, Ferris, DeLeon, & Crook, 1982) describes the dementia trajectory in seven global stages based on cognition and function (see Table 1). While there may be individual variability in the course of the illness, the GDS can serve as a useful guide foreshadowing the significant turning points, or transitions in the dementia trajectory. We recognize these important transitions to include the following: obtaining the initial diagnosis of dementia; advanced planning for financial concerns and healthcare considerations; driving cessation; managing behavioral symptoms; changes in settings; and preparing for end-of-life.

Table 1: Seven stages of Alzheimer’s

 

Memory Loss

Functional Loss

Stage 1

No subjective complaints of memory deficit

Normal function

Stage 2

Very mild decline

Persons may feel as though they are having memory lapses but these are invisible to family and friends.

Stage 3

Mild decline

Trouble remembering names and performing some complex activities. May lose or misplace valuable possessions.

Stage 4

Moderate decline

Greater difficulty with performing complex tasks, such as instrumental activities of daily living (managing finances, shopping). May be becoming moody or withdrawn.

Stage 5

Moderately severe decline

May still be independent with eating and toileting. May forget own address. May require assistance with choosing weather-appropriate clothing.

Stage 6

Severe decline

Personality changes may take place. May need assistance with activities of daily living. Experiences disturbed sleep. May wander and become lost.

Stage 7

Very severe decline

Likely need assistance with all aspects of care. May or may not retain verbal abilities. Muscles may become rigid; swallowing impaired.

(Alzheimer's Association, 2012, and Reisberg, B. et al 1982)

Initial Diagnosis

Diagnosing dementia is difficult, particularly in early stages. Some families wait as long as 1 year to receive a definitive diagnosis of Alzheimer’s disease (Gibson & Anderson, 2011). In GDS stage 1, memory deficit is not evident on clinical interview and the older adult often does not complain of memory deficits (Reisberg et al., 1982). While in GDS stage 2, the older adult may complain of forgetting names or location of familiar objects, but there is still no objective evidence of memory deficit on clinical interview. The earliest clear-cut deficits become evident in GDS stage 3 when word-finding deficits become evident, and concentration and memory are impaired.

For many family caregivers, the initial diagnosis of dementia marks the formal entry into the caregiver role. This period can be a difficult transition as caregivers learn to cope with losses and changes in behaviors (Ducharme et al., 2011). Many family caregivers receive little information about dementia and its prognosis (Bamford et al., 2004; Robinson et al., 2011). Families report that they are inadequately educated about the disease trajectory and the benefits of potential community resources, both at the time of diagnosis and at one-year follow-up (Gibson & Anderson, 2011Laakkonen, Raivio, Eloniemi-Sulkava, et al., 2008). In addition, stigma associated with the diagnosis of Alzheimer’s disease may cause family and friends to distance themselves and lead to a loss of informal support and feelings of isolation for family caregivers (Werner, Mittelman, Goldstein, & Heinik, 2012).

Advance Planning: Financial Concerns

Dementia can affect family finances in several ways. Family caregivers may have to take time from work or pay out-of-pocket for medical and care-giving expenses not covered by insurance. They may also have to assume responsibility for managing finances for the person with dementia.

...another important turning point early in the dementia trajectory is proactively planning for how financial matters will be handled. Financial capacity, defined as the ability to manage one’s financial affairs consistent with personal self-interest, is one of the first instrumental activities of daily living to be lost (Marson et al., 2009; Model & Instrument, 2000; Widera, Steenpass, Marson, & Sudore, 2011). As the disease progresses, older adults with dementia lose the ability to make meaningful decisions about their current and future financial and health affairs. Therefore, another important turning point early in the dementia trajectory is proactively planning for how financial matters will be handled. It is important to address these issues early in the disease trajectory so that the person with dementia can participate in the discussion.

Advance Planning: Health Care Considerations

...a study of 127 patients without advance directives presenting for a cognitive evaluation found that 39% still did not have directives after 5 years Advance care planning is a process of preparing and documenting preferences for future health decisions. Similar to planning for financial matters, family caregivers also desire guidance with advance care planning for those with dementia. In a study of 1,943 caregivers of people with dementia in Finland, 59% expressed the wish to discuss advance care planning with their spouse’s physician after initial diagnosis; however, only 6% reported having that discussion (Laakkonen, Raivio, Eloniemi-Sulkava, Tilvis, & Pitkälä, 2008). Likewise, advance directive completion rates in the United States are low even among those with dementia. For example, a study of 127 patients without advance directives presenting for a cognitive evaluation found that 39% still did not have directives after 5 years (Garand, Dew, Lingler, & DeKosky, 2011).

Driving

Throughout Stages 4 to 6 of the Global Deterioration Scale (Reisberg et al., 1982), personal safety issues and behavioral symptoms become more prominent concerns for family caregivers. By far, the most frequent dilemma for families focuses on the issue of driving. While early diagnosis of dementia may mean that those diagnosed are allowed to drive, as the disease progresses, driving skills will diminish, and the person with dementia must stop driving. Knowing when and how to stop a person with dementia from driving is a difficult challenge, and few community-based interventions exist to assist family caregivers with the driving cessation process (Dobbs, Harper, & Wood, 2009).

Managing Behavioral Symptoms

Behavioral symptoms of dementia are common challenges for family caregivers. These symptoms include apathy, agitation, aggression, delusions, hallucinations, and wandering. Seventy-five percent of all persons with dementia were reported to have experienced at least one of these behavioral symptoms within a 30 day period (Lyketsos et al., 2002), while many also experience sleep disturbances (McCurry et al., 2000). The presence of one or more of these difficult behaviors is predictive of high burden in family caregivers and, subsequently, nursing home placement for persons with dementia (Yaffe et al., 2002). While pharmacologic interventions are often used in an attempt to minimize these behaviors, the efficacy and safety of these interventions remain in question (Ballard et al., 2009).

Changes in Care Setting

Nursing home placement is another important transition for patients and family members. Nursing home placement is another important transition for patients and family members. By the age of 80 years, approximately 75% of people with dementia will require nursing home admission (Arrighi, Neumann, Lieberburg, & Townsend, 2010). The majority (90%) of people with dementia will require nursing home placement at some point in their illness (Smith, Kikmen, & O'Brien, 2000). Moreover, 70% of those with dementia receive end-of-life care in nursing homes (Mitchell, Teno, Miller, & Mor, 2005). When family members are unable to care for a person with dementia at home, the decision to relocate is another one of the most challenging transitions for family caregivers. Nursing intervention is needed during this transition because feelings of isolation and burden continue even during nursing home placement (Bramble, Moyle, & McAllister, 2009).

Older adults with AD and other dementias have more hospital stays, skilled nursing home stays, and home healthcare visits than other older people. In 2004, there were 828 hospital stays per 1,000 Medicare beneficiaries aged 65 and older with AD or other dementias compared with 266 hospital stays per 1,000 Medicare beneficiaries without these conditions (Alzheimer’s Association, 2010). At any point in time, about one-quarter of all hospital patients aged 65 and older are people with Alzheimer’s and other dementias  (Alzheimer’s Association, 2010).

Nursing home residents with advanced dementia experience, on average, 1.6 hospital transfers in the last 90 days of life (Gruneir, Miller, Feng, Intrator, & Mor, 2008). Hospitalizations are costly and often traumatic for those with dementia (Boockvar et al., 2005; Morrison & Siu, 2000). Hospital transfers are also common for those with dementia in the last 6 months of life (Lamberg, Person, Kiely, & Mitchell, 2005; Mitchell, Kiely, & Hamel, 2004) despite poor outcomes and high mortality rates (Boockvar et al., 2005; Sampson, Blanchard, Jones, Tookman, & King, 2009; Zekry et al., 2009). In the United States, approximately 16% of those dying from dementia die in hospitals (Gruneir et al., 2008). Evidence suggests that the most common conditions precipitating hospital transfers in these residents (e.g., pneumonia) can be treated with the same efficacy in the nursing home setting and therefore transfers are potentially avoidable (Boockvar et al., 2005; Kruse et al., 2004; Loeb et al., 2006).

End of Life

In the final stage of dementia (GDS 7), all verbal abilities are lost. There is generalized rigidity and developmental neurologic reflexes, such as rooting and glabellar reflexes, frequently reappear. The six month mortality rate for those with advanced dementia who develop pneumonia, febrile episodes, or eating problems is approximately 40 to 45%, suggesting that these events herald the final transition in the dementia trajectory (Mitchell et al., 2009).

There is widespread agreement that palliative care, rather than aggressive, life-sustaining care, should be provided to those with advanced dementia. However, at present, few receive this care and many die with burdensome interventions such as hospital transfers, emergency room visits, parental therapy, or tube feeding, accompanied by distressing symptoms such as dyspnea, pain, and agitation (Mitchell et al., 2009).

Barriers to the provision of palliative end-of-life care for those with dementia include failure to recognize dementia as a terminal illness and poor communication. The organizational culture of some nursing homes (e.g., the environment, care processes, decision-making processes, and values) may also promote life-sustaining rather than palliative care (Kayser-Jones et al., 2003; Lopez, Amella, Strumpf, Teno, & Mitchell, 2010). In addition, lack of adequate numbers and education of staff have been debated as factors in maintaining a life-sustaining environment in these facilities (Ersek & Wilson, 2004).

Family caregivers are most often the primary decision makers for people with advanced dementia, yet they are often unprepared to make choices related to transitioning from “aggressive” or “life-sustaining care” to “comfort measures” (Lopez, 2007; Lopez, 2009a). Indeed, they often look to nurses to help guide their decision making, but some nurses are reluctant to provide this direction (Lopez, Amella, Mitchell, & Strumpf, 2010).

...nurses can play important roles in assisting family members to successfully navigate these transitions. In summary, beginning with the initial diagnosis of dementia through the end of life, family caregivers face many transitions which can cause intense stress, burden, and depression. It is at these junctures where nurses can play important roles in assisting family members to successfully navigate these transitions. In the next section, we will explore evidence based strategies that nurses can use to provide anticipatory guidance to family caregivers.

Nursing Roles in Transitions

Initial Diagnosis

[Nurses] can work to mobilize an interdisciplinary team whose members work together with families through the dementia trajectory. Early detection of dementia is advocated as a means of beginning treatment early and planning for progression of the disease. Detection is often delayed, however, because families and caregivers may consider some of the early symptoms a “normal” part of aging; the person with dementia may lack insight into their symptoms; and some families may fear stigma that can be attached to the condition. Therefore, nurses can help raise awareness of the early symptoms of dementia and the benefits of early initiation of treatment. They can work to mobilize an interdisciplinary team whose members work together with families through the dementia trajectory. In addition, nurses can help de-stigmatize dementia through open, honest discussion and ensuring that family caregivers are empowered to take a proactive approach to their new role.

Nurses can provide information that may help family caregivers prepare for this role. For example, research indicates that caregivers who participated in an intervention titled, “Learning to Become a Family Caregiver,” were more confident in dealing with care giving situations and perceived themselves more efficacious and better able to plan for the future (Ducharme et al., 2011). This education program focused on the acquisition of skills to help caregivers adapt to their new role. It consisted of seven modules on the following topics: caregiver perception of the care situation; coping strategies; how to communicate and enjoy time spent; how to use one’s strengths; how to get family and friends to help; knowledge of services; and planning ahead for the future. Whether working with clients in groups or in one-to-one sessions, nurses can be instrumental in providing this much needed information. Resources that may direct nurses to the information which families need in various transitions are in located in Table 2.

Table 2. Anticipatory Guidance for Dementia: Resources for Nurses

Transition

Online Resources

Initial Diagnosis

Alzheimer's Association
www.alz.org/

Family Caregiver Alliance
www.caregiver.org/jsp/content_node.jsp?nodeid=349

Eldercare Locator Administrator on Aging
www.eldercare.gov/Eldercare.NET/Public/Index.aspx

Advance Planning: Financial Concerns

Alzheimer's Association
Financial Matters
www.alz.org/living_with_alzheimers_financial_matters.asp

National Institutes of Health National Institute on Aging
Legal and Financial Planning for People with Alzheimer's Disease
www.nia.nih.gov/alzheimers/publication/legal-and-financial-planning-people-alzheimers-disease-fact-sheet

Legal and Financial Planning for People with Alzheimer's Disease: Fact Sheet
www.nia.nih.gov/sites/default/files/LegalFinancialPlanning.pdf

 

Advance Planning: Health Care Considerations

National Healthcare Decisions Day
www.nhdd.org/

 

Driving

American Academy of Neurology Update: Evaluation and Management of Driving Risk in Dementia
www.aan.com/practice/guideline/uploads/397.pdf.

Family Caregiver Alliance
Dementia and Driving
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=432

 

Behavioral Symptoms

Family Caregiver Alliance
Caregiver's guide to understanding dementia behaviors
www.caregiver.org/jsp/content_node.jsp?nodeid=391

Alzheimer's Association
www.alz.org/professionals_and_researchers_behavioral_symptoms_pr.asp

 

Changes in Care Setting

National Transitions of Care Coalition
Transition of Care Measures
www.ntocc.org/Portals/0/TransitionsOfCare_Measures.pdf

The Hospital Elder Life Program
http://hospitalelderlifeprogram.org/public/patient-family.php

American Health Care Association
Coping with the Transition
www.longtermcareliving.com/transition/index.htm

 

End-of-Life Care

Helpguide.org
Late Stage and End-of-life Care
www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm

Advance Planning: Financial Concerns

Family caregivers frequently seek advice about financial concerns, but they are often overlooked by health care providers (Widera et al., 2011). The role of healthcare providers is to educate patients and families about the need for advanced financial planning; recognize signs and assess for financial impairment; and know when and to whom to refer (Widera et al., 2011).

There are three approaches to a clinical assessment of financial capacity: patient and informant reports of financial skills; direct assessment; and clinical interview (Marson et al., 2009). The Financial Capacity Instrument is a useful clinical instrument to assess financial capacity in older adults with dementia (Marson et al., 2009). The instrument assesses eight domains: basic monetary skills, financial conceptual knowledge, cash transactions, checkbook management, bank statement management, financial judgment and bill payment, and knowledge of personal assets. In addition, the National Institute on Aging provides more information in a fact sheet about legal and financial planning for people diagnosed with AD (National Institutes of Health, 2012). Nurses can play an active role in helping family caregivers acknowledge and anticipate such financial challenges and referring them to elder law attorneys; area agency in aging officials; state legal aid offices; the state bar association; and social service agencies.

Advance Planning: Health Care Considerations

The role of healthcare providers is to educate patients and families about the need for advanced financial planning; recognize signs and assess for financial impairment; and know when and to whom to refer. Nurses are key advocates to help family members to begin the sensitive process of open communication in order to document advance care planning. Two nurse-led interventions aimed at improving the process of advance care planning suggested a unique opportunity to extend the roles and function of nurses in this process. Chan and Pang (2010) found that a nurse facilitator guiding frail nursing home residents to share their stories and express their end-of-life wishes was effective to clarify participants’ treatment preferences. Likewise, an advanced practice nurse serving in the role of advance care planning “broker” was able to maintain patient integrity; ensure that directives were updated; alleviate fears about discussing options; act as an intermediary between decision makers; and respond in a flexible way (Jeong, Higgins, & McMillan, 2007). These studies highlight the importance of broadening the concept of advance care planning from completion of a document to an ongoing process of understanding values and goals and also the role of nursing in this transition. Nurses can leverage their unique relationship of trust with patients to facilitate this process.

There are resources online to help patients and families identify and document priorities and decisions related to health care. For example, April 16, 2012 was the 5th annual National Healthcare Decisions Day (2011). This initiative states a mission to encourage patients to express their wishes regarding health care and for providers to respect these wishes (see Table 2.).

Driving

There is no single diagnostic tool that accurately predicts the time when a person with dementia should no longer drive, therefore family caregivers often struggle with when and how to stop the person with dementia from driving. While many states do not have laws mandating health care providers to report unsafe drivers, there are guidelines available that may be helpful in reaching a consensus on this matter (Iverson et al., 2010). These guidelines suggest that the evidence is strongest for a score of 0.5 or higher on the Clinical Dementia Rating Scale (Morris et al.,1993) as a criterion for cessation of driving. Nurses play critical roles in educating and coaching family members through this difficult decision making process. The American Academy of Neurology has updated guidelines regarding evaluation and management of driving risk and dementia (see Table 2.).

As many as 60% of all persons with dementia will become lost at some point in the course of their disease (Rowe and Glover, 2001). In most instances, persons with dementia become lost in the community while they are engaged in normal, independent activities that they are performing at appropriate times of the day (Rowe et al., 2011). The need to have easily recognizable and proper identification and to investigate the use of radio-frequency locator devices for persons with dementia is important topic that nurses can discuss with family members.

Managing Behavioral Symptoms

Common troublesome behaviors for families include refusal of care and repetitive vocalization. Research found that an intervention such as Advanced Caregiver Training (ACT) was effective to reduce these behaviors, and thus caregiver upset. This intervention targets troublesome behaviors and provides strategies for management. Problem behaviors are conceptualized as a consequence of interacting factors. Some factors were patient-based, such as unmet needs or discomfort, and others were caregiver-based, such as stress and environment clutter. Caregivers were coached to identify and then modify potential triggers in each of these domains to help eliminate, reduce, or prevent the targeted behavior (Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010).

Nurses can educate family caregivers in non-pharmacologic therapies that may decrease the occurrence of difficult behaviors. In addition to environmental changes (Cohen-Mansfield, 2001; Teri, Logsdon, & McCurry, 2002). That can be made, other treatments (e.g., social and/or physical activities; music and/or art therapy) are easily used and adapted to match the individual needs and interests of both the care recipient and caregiver.

Changes in Care Setting

...APNs providing care to residents in nursing homes prevent unnecessary hospitalization. Applications of the Transitions Care Model (TCM) have demonstrated efficacy in decreasing readmissions, length of subsequent hospitalization, and overall costs (Naylor et al., 1999; Naylor, Bowles, & Brooten, 2000). The TCM makes use of nurses educated at the master’s level as Advanced Practice Nurses (APN), such as clinical nurse specialists or nurse practitioners, who prepare patients for discharge and coordinate discharge planning with patients, physicians, caregivers, hospital nursing staff, social service staff, community resource groups, equipment vendors, and others. Likewise, APNs providing care to residents in nursing homes prevent unnecessary hospitalization (McAiney et al., 2008). Additional information on transition care models is available at the National Transitions of Care Coalition (see Table 2).

Similarly, nurses can play a key role in identifying older adults with dementia who are at high risk for hospital-acquired complications (e.g., delirium) and implementing preventive strategies (S. Robinson, Rich, Weitzel, Vollmer, & Eden, 2008). The Hartford Institute for Geriatric Nursing (2012) provides exceptional online resources on many geriatric topics including issues related to caregiving and hospitalized older adults with dementia.

Dementia care giving does not end with nursing home placement. Family caregivers remain involved in regular visits, ongoing provision of instrument forms of direct care and interaction with staff. While some caregivers report less burden and depression after nursing home placement, a subset of caregivers continue to experience distress (Gaugler, Mittelman, Hepburn, & Newcomer, 2010). These families may benefit from psychosocial interventions during the admission process to ease the transition from home to long term care.

Education regarding the nursing home environment; care policies; management of emotions and stress guilt or grief; validation of families’ decisions; and advocacy in facilitating interactions between staff and family has prompted researchers to suggest screening of at-risk families (Gaugler et al., 2010). A six session educational intervention that consisted of sessions of individual and family counseling, support group participation, and continuous availability of ad hoc telephone counseling significantly reduced burden and depressive symptoms (Gaugler, Roth, Haley, & Mittelman, 2008).

Research also suggests that nursing interventions aimed at facilitating staff-family relationships may impact family caregiver depression by reducing the stress that family caregiver experience (Chen, Sabir, Zimmerman, Suitor, & Pillemer, 2007). In addition, providing psychosocial support via telephone may improve the emotional health of caregivers; diminish feelings of guilt; and promote positive interaction with staff (Davis, Tremont, Bishop, & Fortinsky, 2011).

End of Life

Nurses play an integral part in orchestrating end-of-life care, particularly in nursing homes (Lopez, 2009b). Family caregivers often seek nurses’ guidance in end-of-life care decisions (Lopez, 2009a). In addition, family caregivers are satisfied with end-of-life care provided by nurse practitioners working in nursing homes (Liu et al., 2011).

However, there are still challenges for nurses guiding patients and families in this transition. A study of nursing home nurses’ perceptions of feeding decisions found that some nurses were reluctant to guide family caregivers because they had insufficient empirical information about the risks and benefits of this intervention (Lopez et al., 2010). Some nurses did not perceive guiding families within their scope of practice. Therefore, to enhance the role of nurses in guiding end-of-life decision making, nurse leaders and educators must ensure that nurses remain up-to-date with the most recent best practices; understand their scope of practice related to end-of-life decision making; and appreciate the moral agency that nurses possess as experienced and knowledgeable clinicians.

At the end of life, family caregivers commonly confront difficult decisions about the goals of care, eating problems, and decisions about hospitalization. Family care givers must decide whether their goal of care is to attain comfort or to prolong life. Some family caregivers who choose life prolongation in advanced dementia fear that comfort measures “only” may be an inferior form of treatment or that choosing comfort is synonymous with “giving-up” or “letting go” (Lopez, 2009a). Nurses can help overcome this myth by stressing that “intensive individualized comfort care” can be instituted (Lopez & Pasternak, 2010). Using evidence-based interventions, this model of care gives priority to attaining comfort and maintaining personhood for the patient with dementia and his or her caregivers.  

One very complex, emotional decision is that of feeding a person with advanced dementia. Close to 90% of people with advanced dementia will having eating problems (Mitchell et al., 2009). While evidence does not support the use of feeding tubes as a means of maintaining nutritional status, prolonging life, or preventing pressure ulcers, many family caregivers struggle with this decision (Sampson, Candy, & Jones, 2009). Nurses can play an important part in anticipating this problem and providing family caregivers with current research evidence so that they may plan for this complication. In addition, nurses can work with an interdisciplinary team that includes nutritionists, speech and language therapists, and occupational therapists to implement strategies to help maintain food intake. It is also helpful to allow and encourage family caregivers to nurture the person with dementia through feeding and mealtime (Lopez & Amella, 2010).

Nurses need to help peers and families understand the evidence that supports careful consideration of the decision to make a hospital transfer. Another challenging decision is whether or not to hospitalize nursing home residents with advanced dementia. The main advantage of hospitalization is access to more rapid diagnostics, surgery, and intensive care units. However, disadvantages of hospitalization (e.g., iatrogenesis, delirium, infection, and pressure ulcers) often outweigh benefits of hospital transfer. Moreover, the most common reasons for hospital transfer, infection and complications of tube feeding, are often effectively treated in a skilled nursing facility (Givens, Selby, Goldfeld, & Mitchell). Nurses need to help peers and families understand the evidence that supports careful consideration of the decision to make a hospital transfer.

Recommendations for Further Research

The field of transitional care research is still in its infancy. Evidence-based, best courses of care throughout the dementia trajectory are needed, as well as the identification of best practices for supporting families and caregivers through the transitions in dementia care. The role(s) of nurses working in collaboration with other health care providers and with family members needs to be emphasized in these projects. Finally, research studies aimed at translating the findings of best practices in to health care environments, including home, hospital, adult day care, and long-term care, are needed.

Conclusion

It is imperative that nurses take a proactive role to provide anticipatory guidance for older adults with dementia and family caregivers as they transition along the dementia trajectory. Family caregivers of people with dementia provide the bulk of long-term care and often develop stress, burden, poor health, and financial strain as a result. While many caregivers need to “live in the moment” and hope that they will not have to face the challenges posed by the dementia trajectory, most ultimately will. Therefore, we believe that these family caregivers of persons with dementia deserve the same level of anticipatory guidance that parents of young children receive to ensure that they are prepared for each new transition. It is imperative that nurses take a proactive role to provide this anticipatory guidance for older adults with dementia and family caregivers as they transition along the dementia trajectory. Using the transition theory as a framework for the development and implementation of clinical and educational approaches, nurses can play a pivotal role in the health and well-being of persons with dementia and their family caregivers.

Authors

Karen M. Rose, PhD, RN
E-mail: kmr5q@virginia.edu

Karen Rose received her BSN degree from Shenandoah University in 1984; her MSN degree from Virginia Commonwealth University in 1986; and her PhD degree from the University of Virginia in 2006. She recently completed a 2-year post-doctoral Claire M. Fagin Fellowship with funding from the John A. Hartford Foundation where she focused on interventions to reduce sleep disturbances in persons with dementia and their family caregivers. She currently holds the title of Associate Professor of Nursing and Director of Undergraduate Programs in the School of Nursing at the University of Virginia. Karen’s program of research is focused on improving quality of life for older adults with dementia and their family caregivers. As such, she has completed research studies in the areas of complementary and alternative therapies to ameliorate distressing caregiver symptoms (sleep disturbances, depressive symptoms, negative caregiving appraisal), the feasibility and efficacy of a meditation intervention for caregivers and persons with dementia, and in secondary analysis of large databases focused on quality of life in older adults. These experiences make her qualified to author this paper that addresses transitions in persons with dementia.

Ruth Palan Lopez, PhD, GNP-BC
E-mail: rlopez@mghihp.edu

Ruth Palan Lopez received a BS degree from Boston College in 1982; MS degree from Boston University in 1986; and PhD degree from Boston College in 2004. Ruth recently completed a 2-year post-doctoral Claire M. Fagin Fellowship at the University of Pennsylvania funded from the John A. Hartford Foundation where she focused on nursing home organizational culture and the use of feeding tubes for those with advanced dementia. She currently holds the title of Associate Professor of Nursing at the MGH Institute of Health Professions. Ruth’s  program of research is focused on improving end-of-life care for nursing home residents with dementia and their family caregivers. In addition, she is a certified gerontological nurse practitioner with more than 25 years of clinical practice These experiences contribute to her expertise in the area of transitions in persons with dementia.

References

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© 2012 OJIN: The Online Journal of Issues in Nursing
Article published May 31, 2012


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