Persons with dementia have multiple cognitive deficits that include both memory impairment, which affects the ability to learn new information or recall information previously learned, and 1 or more of the following symptoms-aphasia, apraxia, agnosia, or executive dysfunction-such that the cognitive deficits negatively affect social or occupational functioning with a significant decline in previous abilities.1 In addition, persons with dementia often suffer from comorbid conditions that further complicate care and impede best outcomes. Therefore, developing caregiving strategies for individuals with dementia is urgent, given this increasing prevalence and the associated burden that dementia places not only on the individuals, but on the caregivers, family members, and the resources of the healthcare system.2 Conventional views pertaining to geriatric nursing often paint a picture of the care as being slow paced, predictable, and less demanding than acute care. However, care of the elderly, and in particular those with dementia, is often complex, unpredictable, and unstable.2

Although the eventual outcome for individuals with dementia cannot be altered, specific nursing care strategies that will positively affect the quality of these clients' journey with the disease can be implemented. Furthermore, effective nursing care strategies must be individualized and multimodal so that care can be tailored according to each individual's unique characteristics.3 Nurses can develop such individualized care strategies to maximize the client's quality of life.

The Registered Nurses Association of Ontario (RNAO), with funding from the Ontario Ministry of Health and Long-Term Care (MOHLTC), embarked on a project to develop nursing best practice guidelines (BPG) regarding caregiving strategies for older adults with delirium, dementia, and depression. The project was initiated in September 2003, and the guidelines were complete in June 2004. Best practice guidelines are systematically developed statements that assist nurses and clients to make appropriate decisions about healthcare and to implement evidence-based nursing practice.4 They are tools that can be used to help plan and implement individualized nursing care.

Fifteen advanced practice nurses and nurse researchers were selected to prepare the guidelines on delirium, depression, and dementia. This expert panel convened by the RNAO conducted its work independent of any bias or influence from the MOHLTC. Working groups, composed of these nurses, were formed to focus on one section of the guidelines (delirium, depression, or dementia). Five nurses formed the working group that focused on the guidelines related to dementia care. The goals of the RNAO Nursing Best Practice Guidelines Working Group on Dementia Care were (a) to develop recommendations on which to base BPG for registered nurses and licensed practical nurses who work in diverse settings in acute, long-term, and community care; (b) to base these recommendations on the best available evidence; and (c) to widely disseminate them. The purpose of this article is to report on the dementia care guidelines.

SCOPE OF THE GUIDELINES

The guidelines focus on the following recommendations: (1) practice recommendations directed at the nurse to guide practice regarding caregiving strategies for older adults with delirium, dementia, and/or depression; (2) educational recommendations directed at the educational institutions in which nurses study to support its implementation; and (3) organization and policy recommendations directed at the practice settings and the environment to facilitate nurses' practice.

A strategic and comprehensive review of the existing literature on the assessment and management of mood and behavior symptoms in LTC homes was completed. A computerized search for relevant evidence-based summaries, including guidelines, meta-analyses, and literature reviews, and research literature not contained in these source documents, was conducted by librarian consultants to the Guidelines Project. The search strategy was guided by the following inclusion criteria that specified English language references only, references that specifically addressed depressive and/or behavior symptoms in clients in LTC homes, appropriate guidelines, and meta-analyses. Subsequent reviews of the literature have been conducted by the authors (ie, from September 2003 to January 2007), and additional research has been found to support the dementia care recommendations.

A computerized search of the Medline, Embase, and CINAHL databases for guidelines and articles published from January 1, 1995, to December 2002 was conducted using the following search terms: "dementia management," "delirium management," "depression management," "geriatrics," "practice guideline(s)," "clinical practice guideline(s)," "standards," "consensus statement(s)," "consensus," "evidence based guidelines," and "best practice guidelines." This search yielded 21 potentially relevant guidelines. These were further reviewed according to the set of initial inclusion criteria, such as relevant to guide nursing practice, which resulted in the elimination of 9 guidelines. Through this process, 10 guidelines were selected and obtained for inclusion in the literature base for the project.5-15

The working group adopted a comprehensive search strategy to review all the evidence and to develop consensus statements and recommendations. Using a well-established ranking of levels of evidence, the recommendations were interpreted using the 2-tier system created by Shekelle et al.16 The individual studies are categorized from I to IV on the basis of the best evidence available and expert panel consensus. Although the authors based the guidelines on the best available evidence, during the process of creating them, they became aware of the paucity of sound research on dementia care upon which to base nursing practice. For those in the field, it was no surprise that few studies fulfilled the criteria of level Ia, which represents evidence obtained from meta-analyses or reviews of randomized controlled trials. Somewhat surprisingly, of the 8 recommendations for best practices in the dementia care guidelines, 5 fell into the lowest 2 categories of evidence, levels III and IV (descriptive studies or expert panel consensus). Thus, more than one half of the guidelines related to assessing and managing dementia lack any good-quality research evidence to support the recommended practices. While it may be true that not all nursing care practices require level I research evidence, these findings call into question the state of nursing science with regard to what is known about the effectiveness of nursing care for this population.

RECOMMENDATIONS

Practice

The 8 best practice recommendations form the basis of the guidelines for enhancing dementia care. These recommendations focus on required assessment skills (recommendations 1 to 3), specific knowledge required (recommendations 4 to 6), and the need to involve the families to enhance the assessment and care of the client with dementia (recommendation 7). Recommendation 8 focuses on approaches to implementing persons-centered care for clients with dementia. A very brief discussion of the evidence follows each recommendation. For more information, refer to the Web site: http://www.rnao.org/bestpractices.

Recommendation 1: Nurses should maintain a high index of suspicion for the early symptoms of dementia to initiate appropriate assessments and facilitate individualized care.

Given the burden of dementia for older clients and their caregivers, it is important for nurses to follow up concerns about observations of memory loss and functional decline.2 Since timely assessment and treatment are key to preventing excessive caregiver burden and improving the quality of life for persons with dementia, early recognition of the condition is essential.17,18

Recommendation 2: Nurses should have knowledge of the most common presenting symptoms of Azheimer's disease, vascular dementia, frontotemporal lobe dementia, and Lewy body dementia, and be aware that there are mixed dementias.

There are more than 60 causes of dementia. The 4 most common types of dementia are Alzheimer's disease (60%),2 vascular dementia (15%),19 frontotemporal lobe dementia (5%),20 and Lewy body dementia (20%-25%).21 Each of these dementias has a characteristic onset and disease progression. It is very important to distinguish the type of dementia to maximize functional capacity and independence.

Recommendation 3: Nurses should contribute to comprehensive standardized assessments for identification and monitoring of dementia based on their ongoing observations and expressed concerns from the client, family, and interdisciplinary team.

Caregivers of clients who describe cognitive decline should have their observations taken very seriously.22 Studies confirm that a collateral history should be obtained from a reliable informant, since clients with dementia may lack insight into their illnesses and their cognitive changes may limit the validity of self-report.10,23 Nurses should also be aware of the cultural impact on families' recognition and acceptance of dementia in a family member and that standardized assessment tools may overestimate cognitive impairment in clients whose first language is not English.

Recommendation 4: Nurses caring for clients with dementia should be knowledgeable about pain assessment and management in this population to promote physical and emotional well-being.

Evidence suggests that pain is underdetected and poorly managed among older adults and presents as an even greater challenge for clients who have a dementia.23 Cognitively impaired nursing home residents are often prescribed and administered significantly less analgesic medication than cognitively intact older adults.25 In cognitively impaired older adults, pain reporting is diminished in frequency and intensity but remains valid. Clients with dementia may exhibit changes in behaviors as a result of unidentified and untreated pain such as resistiveness to care, verbal/physical aggression, agitation, pacing, exit seeking, grimacing, signs and symptoms of depression, and lower cognitive and physical performance.26,27

Recommendation 5: Nurses caring for clients with dementia should be knowledgeable about nonpharmacologic interventions for managing behavior to promote physical and psychologic well-being.

Psychologic and social intervention should be the first-line approach to clients who exhibit behavioral symptoms.28 There are studies that have addressed interventions that aim to change a person's behavior by altering the triggers and/or the consequences of the behavior.29 More recently, evidence exists that psychologic and social interventions should be preceded by a systematic assessment to rule out physical needs, as clients' behavioral symptoms may be a consequence of unmet physical needs (ie, pain, hunger, thirst).30

Recommendation 6: Nurses caring for clients with dementia should be knowledgeable about pharmacologic interventions and should advocate for these medications that have fewer side effects.

Before pharmacologic treatment is considered, it is important to rule out physical needs the client may have as well as attempt to use nonpharmacologic interventions. However, in some situations it may be necessary to introduce pharmacologic interventions simultaneously. Two recent reviews provide details of the evidence regarding the efficacy of pharmacologic treatments of behavioral symptoms associated with dementia.31,32 Nurses should have knowledge of and advocate for medications that are shown to have fewer side effects, in order to promote function and coping.

Recommendation 7: Nurses should create partnerships with family members or significant others in the care of clients. This is true for clients who live in either the community or healthcare facilities.

Families have been involved in the caregiving process throughout history but it is only recently that practitioners have begun to recognize and formalize the role of the family in the context of healthcare. The focus of nursing intervention has changed to searching for family strengths and resources and to understanding the family structure,33 and in this way collaboration may be negotiated.

Recommendation 8: Nurses should know their clients, recognize their retained abilities, understand the impact of the environment, and relate effectively when tailoring and implementing their caregiving strategies.

An approach to implementing person-centered care includes conducting an assessment to learn about the individual suffering from dementia.34 If nurses ever hope to understand why an elderly lady becomes distressed and wants to go downstairs before settling into bed each night, care providers must know the circumstances of her life.35 The assessment must also include recognizing the retained abilities of the individual. Abilities threatened in the presence of dementia are self-care, social, interactional, and interpretative.36 Following these individualized assessments, nursing staff can then proceed to relate well to the client37 based on knowing them as individuals, and with the awareness of maneuvering the environment to compensate for the clients' cognitive status.37,38

Education

Recommendation 1: All entry-level nursing programs should include specialized content about the older adult such as normal aging, involvement of client and family throughout the process of nursing care, diseases of old age, assessment and management of delirium, dementia and depression, communication techniques, and appropriate nursing interventions.

Research findings indicate that nurses learn very little about dementia while in school.39 Nursing students should be provided with opportunities to care for older adults. Evidence exists that curricula need to include strategies to help students cope with their experiences, including the positive and enriching experiences that can occur.40

Organization and policy

Often, best practice recommendations are not implemented effectively, which undermine the potential for the best health outcomes not being achieved.41 Best practice guidelines can be successfully implemented with adequate planning, allocation of required resources, and organizational and administrative support. The organizational context has a powerful influence on research utilization. Organizations can support research utilization through professional development opportunities and staffing decisions. In addition, organization complexity, centralization of authority and decision making, and professional autonomy have also been mentioned in the literature as determinants that influence research use.42 As such, a list of organizational and policy recommendations was developed to enhance the success of the dementia practice recommendations being implemented (Table 1).

Table 1. Organizational and policy recommendations*

CONCLUSION

Caring for older adults/residents in LTC with dementia is often a challenge. Concern about the quality of care led to the formation of a panel brought together by the RNAO to develop guidelines specific to care of the client with dementia, delirium, and depression. As a result, BPG were developed and are available. The guidelines will be helpful for frontline staff and others caring for persons with dementia, as well as their families. Implementing the education and organizational recommendations will also close the gap between knowing and doing.

Utilization of evidence-based recommendations in care of persons with dementia is essential to promote the best outcomes for clients. Areas of future research should include studies that are generalizable to the practice setting, as well as research focusing on the translation of research into practice for unregulated healthcare professionals, the development of strategies for effective implementation of BPG, and examination of the role of management and clinical nurse leaders in implementing new knowledge into practice.

REFERENCES