​The Issue in Focus

Dementia is an "umbrella term for a group of cognitive disorders" that are usually characterized by memory impairment and difficulty with language, motor activity, object recognition, and disturbance of executive function (CDC). Although "dementia" is still a commonly used term, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders refers to dementia and amnestic disorder as major neurocognitive disorder, and it recognizes mild neurocognitive disorder as a new entity (American Psychiatric Association).

Types of dementia commonly encountered in aging services settings include dementia related to Alzheimer disease, vascular dementia, dementia related to Parkinson disease, dementia with Lewy bodies, and frontotemporal disorders. However, dementia can also be caused by HIV infection, Huntington disease, or Creutzfeldt-Jakob disease. Potentially reversible causes of dementia or dementia-like symptoms include reactions to medications, nutritional deficiencies, infections, poisoning, brain tumors, and anoxia or hypoxia. (CDC)

The number of older adults in the United States with dementia due to Alzheimer disease is projected to triple between 2010, when an estimated 4.7 million people age 65 or older had dementia due to Alzheimer disease, and 2050, when a projected 13.8 million will have it. The projected increase will be driven largely by the aging of the baby boomer population and increased survival rates in the U.S. population. (Hebert et al.) These figures represent only dementia due to Alzheimer disease.

People with dementia represent a large proportion of those served by aging services organizations. Overall, 50% of nursing home residents, 45% of hospice patients, 40% of residential care residents, 31% of home health clients, and 30% of adult day services participants had Alzheimer disease or other dementias in 2014. (Harris-Kojetin et al.)

In late life, the costs of dementia care—to society and to individuals—outweigh those of other diseases. Among Medicare beneficiaries in the last five years of life, the total costs of care for those with dementia are "substantially larger" than the costs of care for other diseases, according to a study. The researchers measured total social costs—including Medicare, Medicaid, private insurance, out-of-pocket spending, and informal care—for 1,702 Medicare beneficiaries age 70 or older five years before death. For those with dementia, the average total cost was $287,038, whereas the cost was $175,136 for those without dementia who died of heart disease, $173,383 for those without dementia who died of cancer, and $197,286 for those without dementia who died of other causes. Medicare costs were similar across groups. However, out-of-pocket spending was 81% higher for people with dementia ($61,522) than for those without dementia ($34,068). In addition, out-of-pocket spending for those with dementia accounted for 32% of household wealth five years before death, compared with only 11% for those without dementia. The costs of informal care were 117% higher for those with dementia ($83,022) than for those without dementia ($38,272). (Kelley et al.)

Safety and Quality of Life

Optimizing care, services, and quality of life for people with dementia is usually mission critical to organizations that serve this large population. But these efforts are also at the foundation of attempts to reduce threats to the safety of people with dementia.

However, older adults and their family members may not recognize that dementia is a terminal condition, and prognostication in dementia, particularly in regard to death, poses significant challenges. Especially in the absence of education and routine discussions and updates, family members sometimes do not fully comprehend how their loved one's condition is progressing and what may be expected in the future. These factors may contribute to unrealistic expectations and suboptimal decision making about dementia care generally and end-of-life care specifically.

Decline in health and function are part of the normal progression of the condition. But the impact on memory, cognition, safety awareness, and judgment, as well as the impact on other body systems, puts people with dementia at high risk for a host of safety concerns. Risks include accidents, hazardous wandering or elopement, and falls.

Expressions of dementia can challenge staff, family members, or other residents. If the person's needs are not met, such expressions may spur use of physical or chemical restraints, unnecessary antipsychotic use, or even abuse and neglect by staff or informal caregivers. People with dementia who resist care may not receive needed levels of care and services.

Self-protective actions, in particular, can pose risks not just to the person with dementia but also to staff, other residents, and family members. Recent years have even seen several reports of residents with dementia killing other residents. For example, in 2015, an 87-year-old assisted-living resident with Alzheimer disease beat his 76-year-old roommate so severely that the roommate died from his injuries two days later (Paul).

Excellent overall care for dementia, as discussed in this article, is central to preventing safety risks. For information on specific concerns, see the guidance articles Wandering and Elopement, Restraints, Resident Aggression and Violence, and Falls. See Resource List for links to other articles and tools.

Lawsuits and Claims

Many of the safety concerns outlined in the discussion Safety and Quality of Life—such as falls, elopement, and accidents—are common triggers of lawsuits. Cognitive impairment, for example, was a factor in 88% of elopement claims examined in a 2014 claims report from the insurer CNA (CNA).

Suits may be brought not only by people with dementia but also by others who have suffered loss or injury allegedly caused by those with dementia, such as other residents or staff. Staff members have not always been successful in collecting damages for injuries caused by individuals suffering from a cognitive condition that can impair judgment. Instead, employee injuries may be covered by workers' compensation laws, which can vary by state. In addition to workers' compensation costs, organizations may be responsible for disability claims for employee injuries.

Unrealistic expectations can also expose the organization to liability. From a risk management perspective, a family member who does not fully comprehend how their loved one's condition is progressing and what the future course of the disease may entail may blame the organization when their loved one experiences general decline or another dementia-related negative outcome. See Discuss Progression of Dementia and Scope of Services and Plan as a Team for strategies to manage expectations.

Regulations and Standards

CMS Regulations

No F-tag of the Centers for Medicare and Medicaid Services (CMS) State Operations Manual addresses dementia exclusively. However, the surveyor guidance for the quality-of-care tag states that the regulation is intended to apply to residents who have conditions such as dementia, as well as other listed conditions, and it directs surveyors to use the guidance under this tag to review care and services for a resident with dementia (CMS "Appendix PP"). In addition, many other sections of the manual—among others, those addressing restraints, abuse, quality of life, the environment, accidents, staffing, therapeutic diets, and activities—are especially pertinent to residents with dementia.

After a 2014 pilot program that included surveys in five states, CMS began conducting targeted dementia care surveys in other states in 2015. The states that participated in the pilot reported that the surveys were generally a positive experience and that, although they were time-intensive, the surveys yielded valuable results. The 20 surveys yielded 68 deficiency citations, of which 4 were cited at a "harm" level. The most common citations were related to the quality-of-care tag and the tag for unnecessary use of medications; 16 of the 20 surveys cited at least one of these tags, and 11 cited both of them. Stand-alone dementia care surveys take an average of 1.5 to 2 days, although states will have the option of incorporating the surveys into their existing extended or complaint-based survey processes. (CMS "2014 Final Report")

CMS also spearheads the National Partnership to Improve Dementia Care in Nursing Homes, a consortium of federal and state agencies, nursing homes, other providers, advocacy groups, and caregivers. Although reducing unnecessary use of antipsychotics is one focus, the partnership's broad goals include enhancing quality of life and promoting goal-directed, person-centered care. (CMS "National Partnership") See Resource List for more information.

State Assisted-Living Regulations

Most states have regulations for residential care or assisted living that address dementia. Common provisions relate to building design features, disclosure regarding the availability of dementia services and descriptions of the services, staffing and training, and admission screening. A few states require separate licensure or certification for dementia care units or programs. (ASPE) Assisted-living organizations must be familiar with applicable requirements.

Other Legal or Regulatory Issues

Other relevant legal or regulatory issues may relate to the following:

• Licensure of settings other than skilled nursing or assisted living (e.g., adult day services)
• Residents' rights
• Nondiscrimination laws
• Electronic monitoring
• Elder abuse
• Legal capacity
• Advance directives
• Power of attorney, state-designated decision makers, and guardianship
• Driving

Aging services organizations should be familiar with relevant federal and state regulations.

Action Plan

Discuss Progression of Dementia and Scope of Services

Action Recommendation: Determine the scope of services available in each setting type that the organization offers.

Action Recommendation: Discuss with residents or patients and their families the progression of dementia and the scope of services.

Aging services organizations must determine the scope of services available in each setting type that they offer. Internal and external options available to residents or patients whose needs begin to exceed the scope of services offered in their current setting can also be planned and discussed in advance. Organizations may also wish to develop a written algorithm or decision tool to guide and support decision making.

Organizations also need to discuss the progression of dementia with residents and families, as they may have misperceptions about the disease or unrealistic expectations. The scope of services available in each setting type offered by the organization must be discussed with residents and their families before admission. This discussion should address what options are available in the event the individual's needs exceed the scope of services available in the chosen setting.

Organizations must also ensure that their advertising accurately reflects the services offered and meets applicable laws. In 2015, the Alzheimer's Association of Massachusetts and New Hampshire criticized Massachusetts nursing homes for "skirting" a state law regarding advertising of dementia care. The law required all nursing homes in the state to train their staff in dementia care; in addition, it required any nursing home that advertised dementia services to take additional steps, such as hiring an activities director for the dementia unit and having a larger common area and a fenced-in outdoor area. The Alzheimer's Association reviewed the advertising of most nursing homes in the state, finding that 114 nursing homes stated or suggested that they offered dementia services but did not meet the requirements for dementia care units. Some of these nursing homes noted in their advertising that they did not have specialized dementia care units—allegedly an attempt to avoid the law's strict requirements. The health department stated that nursing homes that advertise themselves as offering dementia services must meet the requirements applicable to nursing homes with dementia care units, even if they have a disclaimer stating that they do not have such a unit. (Lazar)

Outline a Framework for Dementia Care

Action Recommendation: Outline an organizational framework for person-centered dementia care, and redesign systems to support a truly person-centered approach.

Dementia care interventions work best when they are tailored to the individual's needs, preferences, interests, and abilities (Dementia Initiative; O'Connor et al.). Therefore, many professional and expert organizations recommend a person-centered approach to the care of individuals with dementia.

A white paper from the Dementia Initiative outlines a framework for a person-centered model of dementia care. The Dementia Initiative is an effort that brought together more than 60 experts in practice, policy, and research, including people with dementia. The participants conducted a literature search, e-mail discussions, and a consensus meeting. Noting that the current mindset among researchers and policymakers emphasizes randomized controlled trials of interventions and focuses on symptoms of dementia, the initiative noted that people with dementia need individualized approaches that respond to their needs, preferences, and interests—in other words, person-centered care. (Dementia Initiative) Framework for Person-Centered Dementia Care illustrates the Dementia Initiative's framework and its components. See Resource List for information on accessing the white paper.

Similarly, a review article seeking to identify elements of optimal dementia care in nursing homes concluded that dementia care should be person-centered and focus on quality of life. According to the literature, essential elements include adequate staff and staff training; in-depth assessments that allow care to be individualized; care planning that involves the resident, family, and staff; prioritization of nonpharmacologic approaches; and environments that are supportive to people with progressing disease. (Gaugler et al.)

Organizational changes may be necessary to meet the needs of people with dementia. For example, if the organization intends to encourage people with dementia to sleep when they are tired, food must be available at times when they are awake (Alonzo). Organizational systems may need to be redesigned to support a truly person-centered approach.

Optimize the Environment

Action Recommendation: Create physical environments that support the needs of residents or patients with dementia.

Because of the effects of dementia on cognition and function, the environment can have a large impact on a person with the condition. Therefore, aging services organizations should create physical environments that support the needs of those with dementia.

The Alzheimer's Foundation of America and the Perkins Eastman Research Collaborative offer Excellence in design: optimal living space for people with Alzheimer's disease and related dementias, a guide intended to address the needs of the growing population of individuals with cognitive impairment and their families and caregivers (see Resource List). Promoting homelike settings that foster person-centered care, the guide emphasizes the importance of "maximizing the remaining strengths of residents with cognitive impairment." It includes detailed recommendations for wayfinding and orientation signs and guides, safety and security, entry and egress, bathing, secure outdoor spaces, room for engaged wandering, and a design that supports caregiver involvement. The guide includes four cases studies of facilities designed to support residents with Alzheimer disease; the case studies include floor plans, photos of individual rooms, plans for the grounds, and descriptions of how the plans were implemented.

Some general principles for making simple improvements to the physical environment for people with dementia are discussed in a literature review (Edgerton and Richie):

• Use disguised or unobtrusive safety measures. To protect residents' safety, dementia care environments should have a secure perimeter. However, safety features should be unobtrusive or disguised, the review states. The use of disguised safety features is associated with less depression and greater feelings of independence and control among people with dementia. For example, disguising main exits (e.g., by placing a mirror on the door) has been found to reduce exit attempts.
• Arrange the space to support a variety of activities. Having a variety of spaces to support a range of activities and allowing residents to choose where they spend their time are associated with better quality of life, fewer negative outcomes such as anxiety and depression, and positive behaviors such as social interaction, the review found.
• Ensure optimum levels of stimulation. Overstimulation and understimulation both negatively affect those with dementia, the review notes. Sensory input should be "understandable and controlled." The review found that environmental factors such as noise and temperature can affect agitation in people with dementia and that quieter environments are associated with better orientation.

The guidance article Wandering and Elopement offers more discussion of how to optimize environments for people at risk for hazardous wandering or elopement.

Home settings pose unique risks to people with dementia because most homes were not designed for this population. The Alzheimer's Association's dementia care practice recommendations suggest a thorough home assessment by an occupational or physical therapist and offer tips for assessing home safety and making the living environment more comfortable and less confusing and stressful for people with dementia (Alzheimer's Association "Dementia Care . . . Home Setting").

Perform Individualized Assessments

Action Recommendation: Remain alert for signs of dementia in those without such a diagnosis, and periodically assess those who have dementia.

For individuals without a dementia diagnosis, staff should remain alert for signs of dementia, such as cognitive or functional decline.

For a list of common early warning signs see 10 Early Warning Signs of Alzheimer Disease. Organizations may wish to share the list and related resources with staff, residents or patients, and family members (see Resource List).

Assessment and diagnosis can determine whether the person has dementia and identify the cause. The process can help distinguish progressive dementia from other conditions that may cause or contribute to cognitive impairment (e.g., delirium, depression) and from potentially reversible causes of dementia. It may also identify comorbid conditions, facilitate support for staff and family caregivers, and allow the use of condition-specific strategies for assessment, management, and monitoring (Fletcher).

The Registered Nurses' Association of Ontario (RNAO) has issued a best-practice guideline on screening for dementia, depression, and delirium that makes several evidence-based recommendations and includes many tools that may aid in screening and assessment (see Resource List). Recommendations that are relevant to dementia screening and assessment include the following (RNAO "Screening"):

• "Maintain a high index of suspicion" for dementia, as well as depression and delirium.
• Based on observations of the resident or patient or based on concerns raised by the individual him- or herself or by the family or interdisciplinary team, screen individuals for changes in cognition, actions, mood, and function.
• Use a structured assessment method that helps distinguish dementia, depression, and delirium.
• Use standardized tools to objectively assess individuals for cognitive changes.
• Refer people who are found to have features of dementia for medical diagnosis.

Although the guideline is aimed at nurses, these recommendations may be useful to staff in other roles, such as social workers, as well (Alonzo).

For those who already have a diagnosis of dementia, the Alzheimer's Association includes recommendations regarding assessment in its practice recommendations for nursing homes and assisted-living residences. The association recommends conducting a "holistic assessment of the resident's abilities and background," which includes understanding the following (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes"):

• Physical health and function
• Cognitive health and decision-making capacity
• Communication abilities
• Sensory capabilities
• Expressions of dementia
• Personal background
• Cultural and spiritual preferences

A thorough assessment includes getting information directly from residents and families whenever possible. Routine formal assessments, such as those conducted using the Minimum Data Set in nursing homes, may facilitate the process. (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes")

Just as important are ongoing assessment and monitoring of the individual's actions and response to interventions. In addition to undergoing routine reassessment, residents should be assessed on return from the hospital and whenever any significant changes occur in their condition. (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes") Negative changes in the signs and symptoms of dementia (e.g., increasing agitation, new self-protective actions) should prompt reassessment for potential causes, triggers, and strategies.

Plan as a Team

Action Recommendation: Hold periodic care-planning meetings with individuals who have dementia, their families, staff, and others (as needed).

Organizations that serve people with dementia hold periodic meetings with individuals who have dementia, their families, staff, and others (as needed) so that the group can plan how to meet the individual's needs, preferences, interests, and abilities. These meetings and other avenues of communication can also help people with dementia and their families understand how the person with dementia is doing and what changes may occur as the dementia progresses. The care plan may need to be revised as the individual's needs, preferences, interests, and abilities change. Thus, care planning and communication are an ongoing process rather than an event or series of events.

The Alzheimer's Association's dementia care practice recommendations suggest including the resident, the proxy decision maker, family members (if the individual with dementia wishes), all staff who regularly interact with the resident, other professionals involved in care (e.g., hospice managers, therapists), and those who provide spiritual support, as needed. Other general care-planning recommendations include the following (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes"; Alzheimer's Association "Dementia Care . . . End-of-Life Care"):

• Ensure that all staff involved in the resident's care know the care plan.
• Update care plans when reassessing the resident.
• Keep care plans flexible enough to respond to daily changes in the resident's preferences and needs (regarding meals, bathing, and activities, for example).

The person with dementia should be as involved as possible in his or her own care planning. People in early or moderate stages of dementia may still be able to express preferences regarding care and services. (Alzheimer's Association "Dementia Care . . . End-of-Life Care") In addition, an individual who has lost the ability to make decisions in one area might not have lost the ability to make decisions in regard to other things.

The early involvement of the person with dementia and family members is important for another reason. Because dementia calls for a person-centered approach, knowing about a resident's activities, preferences, and personal history before he or she came to live at the facility can give insight into effective approaches (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes").

Having a properly designated proxy decision maker affords many benefits to people with dementia. Involving the proxy before the person with dementia loses capacity, with the agreement of the latter, can help the proxy learn about the individual's condition, care, and preferences. If no proxy has been formally designated, state law identifies who may serve as decision maker. In some states, public or court-appointed guardians are available for those who have no family or designated proxy. Methods of alternative dispute resolution, such as mediation or consultation with the ethics committee, may be used to resolve disagreements among family members. (Alzheimer's Association "Dementia Care . . . End-of-Life Care")

Palliative services should be discussed at the time of diagnosis or, if the person was diagnosed previously, when the person relocates to or is admitted to the facility (Alonzo). Organizations that serve many individuals with dementia but do not have a palliative care program may wish to consider implementing one. For more information, see the guidance article Palliative Care Programs. The care-planning team may also offer referrals to or coordinate with other services and community resources, such as support groups, counseling, transportation services, home-delivered meals, financial-planning services, and physical, occupational, or speech therapy.

Individuals with dementia, their proxy decision makers, and their families must be able to understand, to the maximum extent possible, the person's condition, current status, changes that may occur as the individual's condition progresses, and his or her wishes, as well as available treatments and interventions. Therefore, cultural competence and health literacy are essential elements of team care planning and ongoing communication. Communication and comprehension are, in turn, the foundation for realistic expectations. From a risk management perspective, a family member who does not fully comprehend how his or her loved one's condition is progressing and what may be expected in the future may blame the organization when the individual experiences general decline or another dementia-related negative outcome. See the guidance articles Setting Realistic Expectations, Health Literacy, and Culturally and Linguistically Competent Care for more information.

Tools may be used to help proxy decision makers make decisions about the individual's care. A team of researchers piloted a video and support program in two North Carolina nursing homes to test its effectiveness. Decision makers for 18 residents with moderate to severe dementia viewed a brief (18-minute) video that reviewed elements such as the surrogate's role, prognosis and goals of care for medical treatment of advanced dementia, treatment approaches for each of three primary care goals (longevity, function, and comfort), consideration of the resident's personal goals and values, and the pros and cons of choices for each goal. The video was followed by a structured meeting with the resident's care team and supported with print material with content identical to the video.

Of the decision makers, 89% found the video either extremely or somewhat relevant and 61% found the care-planning meeting helpful. Most participants (83%) found the decision-aid video helpful in the context of the care-planning meeting as an overall intervention. Three months after the intervention, participants reported a small but significant increase in the quality of communication with providers and were more accurately able to complete knowledge-based questions about the resident's diagnosis and prognosis. (Einterz et al.)

In settings such as home care, the needs of family caregivers may also need to be "care planned." For example, staff may help caregivers create a schedule that includes time for caregivers to eat, rest, and tend to their own needs. (Alzheimer's Association "Dementia Care . . . Home Setting") Training in dementia care may help caregivers not only provide better care but also cope with the demands of caregiving. See the discussion Support the Family for more information.

Planning for End-of-Life Care

Discussions about preferences regarding end-of-life care should begin as soon as possible after diagnosis. Memory loss, impairment in judgment, and communication difficulties make decision making more difficult as dementia progresses. (Alzheimer's Association "Dementia Care . . . End-of-Life Care")

Dementia-related decline is inevitable, and end-of-life decision making can be very stressful for proxies if their loved one is no longer able to participate. And as the Alzheimer's Association's practice recommendations for end-of-life care state, "peer-reviewed research has shown that many medical interventions produce either no benefit or have detrimental effects on people with advanced dementia" (Alzheimer's Association "Dementia Care . . . End-of-Life Care"). Especially because prognostication is challenging in dementia, organizations should be knowledgeable about burdensome or unnecessary treatments that do not lengthen life or enhance quality of life (Alonzo). Cardiopulmonary resuscitation, intubation, hospitalization, and tube feedings are just a few examples of interventions that an individual may choose to forgo because they carry a high burden and high risks but may not be effective. For these and other reasons, it is vital to discuss end-of-life treatment options early in the course of care.

​Organizations should also honor individuals' advance directives and related physician orders (e.g., do-not-resuscitate orders) and follow applicable laws and regulations addressing them. The federal Patient Self-Determination Act of 1990 requires healthcare institutions that receive Medicare or Medicaid funding to inform patients, staff, and the community about healthcare decision-making rights under state law, including the right to formulate advance directives. Healthcare institutions must also develop and provide information to patients about institutional policy regarding honoring patients' advance directives. State statutes, case law, federal regulations, CMS guidelines, and accreditation requirements also address residents' rights to prepare advance directives.

For residents, patients, or clients who do not already have advance directives, staff can discuss care options and offer materials such as workbooks or state-approved forms or refer them to groups that can offer more help. For those who already have advance directives, staff should get copies, place them in the individual's record, ensure that they are available to the whole care team, and send copies with the individual if he or she is transferred to the hospital or another care setting. (Alzheimer's Association "Dementia Care . . . End-of-Life Care")

It is important not only to identify goals of care from the very beginning of care planning but also to recognize that goals of care will likely change, particularly at the end of life. Referral for hospice care should be considered when the individual becomes eligible but should not be reserved until he or she is actively dying. For more information, see the guidance article Hospice Care.

Families, staff, and other residents may also need support during and after a resident's death. Counselors, social workers, chaplains, or nurses, for example, may inform the family of what to expect, lead support groups, and provide other support. Other staff may offer ways to help the family be involved in the individual's care or otherwise support them during the dying process. (Alzheimer's Association "Dementia Care . . . End-of-Life Care")

Provide Individualized Care and Services

Action Recommendation: Provide individualized care and services, including palliative services, that match the person's needs, preferences, interests, and abilities.

Aging services organizations should provide individualized care and services that match the needs, preferences, interests, and abilities of the person with dementia. In recent years, nonpharmacologic interventions have been emphasized, as highlighted by CMS initiatives to improve dementia care, in general, and reduce unnecessary use of antipsychotics, in particular.

Nonpharmacologic Interventions

Many nonpharmacologic interventions have been studied in randomized controlled trials, but systematic reviews often find no substantial evidence to support their use, or they conclude that the evidence that does support their use is of limited strength. This may lead people to believe that the specific interventions studied are ineffective. However, randomized controlled trials may not be the "gold standard" for evaluating specific dementia care interventions, as the Dementia Initiative points out, partly because it appears that dementia care interventions work best when they are tailored to the individual (Dementia Initiative; O'Connor et al.). Randomization and delivery of an intervention in uniform ways to an entire study group are antithetical to the individualization that is necessary for people with dementia. For example, someone who generally dislikes being touched is unlikely to benefit from hand massage; in fact, the person may become more agitated, perhaps even self-protective.

Instead, interventions should be tailored based on the individual's needs, preferences, interests, and abilities, and staff should monitor the response. Potential Interventions for Person-Centered Dementia Care illustrates some potential types of interventions, but the options it suggests are not exhaustive. In addition, the Alzheimer's Association's practice recommendations for nursing homes and assisted-living residences and for home settings (see Resource List) offer specific recommendations regarding nutrition and hydration, pain management, social engagement, wandering, falls, and other topics.

An algorithm has been developed to address challenging dementia-related actions. The algorithm and other problem-solving tools were created as part of a three-year study to reduce inappropriate reliance on antipsychotic medications and optimize their use when they are necessary.

The algorithm comprises three steps (Smith et al.):

1. Identify and treat causal or contributing factors. Users begin by recording the frequency, duration, intensity, and characteristics of each action. Then, they identify and treat or eliminate antecedents to or triggers of the action. The algorithm lists four categories of contributing factors: unmet physical needs (e.g., pain, infection, medication side effects, constipation, sensory deficits); unmet psychological needs (e.g., boredom, fear, lack of enjoyable activities); environmental causes (e.g., wayfinding factors, levels and types of stimulation, staff approaches to care); and psychiatric causes (e.g., depression, anxiety, delirium). These factors are addressed, and the response is monitored.
2. If the actions persist, select nonpharmacologic interventions to attempt, based on the individual's abilities, resources, and preferences. The three categories of interventions are modifying staff approaches (e.g., distracting the individual, not confronting erroneous beliefs, tailoring activities); changing the environment (e.g., eliminating misleading stimuli such as clutter and noise, modifying the physical environment); and using individualized evidence-based interventions (e.g., music the person enjoys, rest stations, physical exercise).
3. Monitor outcomes using standardized rating scales or logs and adjust as needed.

To develop intervention plans, the care-plan team can meet to identify approaches that might be advantageous and then test the interventions to determine which, if any, are effective (Alonzo). The algorithm and other materials are available from the Iowa Geriatric Education Center (see Resource List). The additional materials include training videos, a mobile app, pocket guides (including a simplified version of the algorithm), materials for patients and family members, and evidence-based reviews.

Another freely available toolkit compiles peer-reviewed and expert-endorsed nonpharmacologic approaches to managing behavioral and psychological symptoms of dementia. Supported by funding from the Commonwealth Fund and the John A. Hartford Foundation, the toolkit includes a rationale for taking a person-centered approach; a discussion of systems issues to consider before implementation; educational programs for leaders and direct care staff; assessment tools; clinical decision-making algorithms that help identify triggers; evidence-based nonpharmacologic interventions; and procedures for response to emergent actions. A team of clinicians and researchers developed the toolkit based on current evidence regarding how best to work with people with behavioral and psychological symptoms of dementia. In focus groups, the developers asked direct care staff what types of information and methods of information delivery they found most helpful and incorporated their suggestions into the toolkit. (Resnick et al.) See Resource List for information on accessing the toolkit.

However, the most effective intervention for a particular individual with dementia is not always found on a list. Consider the following example. An assisted-living resident with dementia constantly rummages through other residents' things, finds a "prize," and walks around with it tucked under her arm. An aide asks the resident's daughter if the resident used to often carry something under her arm. The daughter tells the aide that the resident always carried her purse like that. After the daughter brings in an old purse, the resident begins carrying it everywhere and rarely rummages through other people's things. Keen observation skills, familiarity with the individual, partnership with his or her loved ones, and some creativity may make all the difference in the care of someone with dementia. Similarly, RNAO's nursing best-practice guideline on caregiving strategies for dementia, depression, and delirium recommends that nurses "know their clients, recognize their retained abilities, understand the impact of the environment, and relate effectively when tailoring and implementing their caregiving strategies" (RNAO "Caregiving Strategies").

Various models of care have been created to promote person-centered care. Comfort Matters is an approach that focuses on the comfort of residents with advanced dementia. (In this model, "comfort" refers to what the person would do for themselves if they could, rather than "comfort measures" as are often discussed specifically in regard to end-of-life care). A 2014 Long-Term Living article describes how the model is used in one continuing care retirement community's neighborhood for those with advanced dementia. Staff strive to know the individual, anticipate his or her needs, and practice "person-directedness." Residents sleep when they want, eat when and what they want, and perform activities of daily living on their own terms. Interdisciplinary teams are led by a nurse and social worker, but the model includes competencies that have been created for each department in the nursing home. No residents exhibit "sundown" symptoms, and they rarely resist care. The average resident takes fewer than five medications; antipsychotic and anxiolytic medication use is minimal; and no sedatives are given. No physical restraints are used, and 87% of residents use the toilet. Hospital utilization is less than 3% and emergency department utilization is less than 2% annually. Family members of the residents with advanced dementia have the highest satisfaction on the campus. Costs have not increased and in some instances have decreased. (Bowers; Alonzo)

Pharmacologic Interventions

For managing signs and symptoms of dementia, nonpharmacologic interventions are preferred. But if medications have been prescribed, staff should monitor and document the impact on the individual's health, cognitive function, falls risk factors (e.g., dizziness), change in appetite, comfort, and quality of life (Alzheimer's Association "Dementia Care . . . Home Setting"). Staff can also suggest discontinuation to prescribers if the actions become well managed using nonpharmacologic interventions.

Care Transitions

Care transitions are high-risk endeavors for people with dementia for a few reasons. Information about the person's dementia and strategies for working with him or her are not always communicated. Staff or informal caregivers in the receiving setting are not always proficient in working with people with dementia. Finally, changing to a new environment, particularly an unfamiliar one, can exacerbate dementia symptoms and may be generally distressing for the individual.

When a care transition is being contemplated, a primary question is whether it is in line with the individual's wishes. See the discussion Plan as a Team for more information. Staff should also consider whether the person's needs can be met in the current environment.

If a care transition is necessary and appropriate, transition planning should be premised on an understanding of the person's functional abilities, limitations, needs, and formal and informal supports. The transferring organization should share with the receiving organization information on the individual's dementia diagnosis, symptoms and actions, and key strategies, as well as other relevant information. Arranging for a family member or advocate to accompany or visit the person may help provide familiarity if the receiving setting is unfamiliar. The receiving care setting should recognize that a change in surroundings can exacerbate dementia-related symptoms or even trigger new actions (e.g., wandering in an individual who has not previously been prone to wander).

Individuals with dementia should also be reassessed when they return from another care setting. Medications should be reconciled, and the organization should keep apprised of any outstanding test results and the need for follow-up.

Staff and Train Effectively

Action Recommendation: Staff effectively, and train all staff in how to work with people with dementia.

Staffing

Aging services organizations must have adequate numbers of staff with an appropriate mix of skills to serve the needs of individuals with dementia. The Alzheimer's Association's dementia care practice recommendations for nursing homes and assisted-living residences recommend staffing patterns that ensure that residents with dementia have enough help to accomplish their personal care and health routines and to "participate in the daily life of the residence." The document also recommends having consistent staff assignments to facilitate quality relationships. (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes")

Similarly, RNAO's nursing best-practice guideline on caregiving strategies for dementia, depression, and delirium recommends ensuring that nurses' workloads are kept at levels that are conducive to the care of people with these conditions; taking acuity, complexity, and availability of expert resources into account when making staffing decisions; and considering nurses' well-being as "vital" to providing care to these individuals (RNAO "Caregiving Strategies"). These recommendations should be applied to other staff roles as well.

Training

Staff should be trained in how to work with people with dementia. Evidence shows that staff training has a positive impact on these individuals. A large systematic review found that training staff in person-centered care, communication skills, or modified dementia care mapping (with supervision during initial training and implementation for ongoing practical and theoretical advice) reduced clinically significant agitation in care home residents with dementia, both immediately and up to six months afterward (Livingston et al.).

The Alzheimer's Association recommends addressing the following topics during periodic training of nursing home and assisted-living staff (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes"):

• Dementia, including memory loss, disease progression, psychiatric symptoms, and actions
• Communication challenges and strategies
• Family dynamics
• Strategies for person-centered care
• Ways to address particular aspects of care (e.g., social engagement, pain management, nutrition and hydration)
• Techniques for understanding and approaching the person's actions, including alternatives to restraints

Ongoing coaching for supervisors may help them learn to empower direct care staff to make decisions during interactions with residents. In addition, staff should be recognized for using problem-solving approaches and offered emotional support for dealing with the decline and death of residents. (Alzheimer's Association "Dementia Care . . . Assisted Living Residences and Nursing Homes")

The Alzheimer's Association's dementia care practice recommendations for home settings suggest covering many of the same topics, plus others that are more common to home care specifically. They also offer information on how to approach and communicate with a person with dementia and on how to interpret the individual's actions as a form of communication, which may be of interest in other settings as well. For example, consistently refusing a certain food may mean that the person does not like that particular food; if the person continues to refuse food when offered something else, difficulty swallowing may be one explanation. (Alzheimer's Association "Dementia Care . . . Home Setting")

Staff may also need specific training in end-of-life care. In nursing homes and assisted-living facilities, education and training in end-of-life care for people with dementia should address the following (Alzheimer's Association "Dementia Care . . . End-of-Life Care"):

• Dementia as a terminal illness
• Talking with the resident, proxy decision maker, and family about advance care planning and end-of-life decision making
• Goals of care at the end of life (e.g., restorative versus palliative)
• Communication with residents who have dementia
• Cultural competence
• Assessment of symptoms and actions
• Nonpharmacologic and pharmacologic treatment options at the end of life
• Care coordination with hospice providers and others
• Signs of imminent death
• Communicating with the resident, proxy decision maker, and family when the resident has begun the dying process
• Need to honor advance directives and the proxy's decisions, even if personal beliefs conflict
• Support for the resident, the family, other residents, and staff
• The grieving process and family members' bereavement needs

A contracted hospice may be willing to train the organization's staff in end-of-life care. In addition, staff members who are skilled in providing end-of-life dementia care can share their knowledge with new or part-time staff members, such as through a mentoring program. (Alzheimer's Association "Dementia Care . . . End-of-Life Care")

Support the Family

Action Recommendation: Offer education and training, referrals to other resources, and other support to family members as needed and appropriate.

Having a loved one with dementia can be trying for family members, particularly when those family members provide informal care, make decisions on the person's behalf after the individual has lost capacity, or witness the ultimately profound effects of the condition. Aging services organizations should offer education and training, referrals to other resources, and other support to family members as needed and appropriate.

In addition to the disease and its progression, topics for caregiver education include the following (Fletcher):

• Helping the individual maintain function and autonomy
• Helping the individual exercise his or her cognitive and physical abilities
• Keeping the environment safe and comfortable
• Providing care
• Communicating with the person with dementia
• Managing the person's actions
• Planning for future care and financial needs
• Coping as a caregiver
• Developing a support network

Because family members often play a central role in caring for home care clients with dementia, support of the family caregiver takes on particular importance in this setting. The Alzheimer's Association's practice recommendations for home care suggest discussing the following during routine meetings with family caregivers (Alzheimer's Association "Dementia Care . . . Home Setting"):

• Changes that may occur as the disease progresses and need for ongoing monitoring
• Issues that should prompt a call to the physician (e.g., delirium)
• Care goals and the potential for changes in those goals over time
• Preparation for loss of decision-making capacity
• Changes in sleeping and waking patterns
• Nutrition, hydration, meals, and swallowing
• Incontinence management
• Pain recognition and management
• Risks and strategies related to safety issues, such as wandering, falls, and driving
• Alternatives to restraints
• Actions that put the client or family members at risk for harm
• Caregiver stress and respite

Family caregivers may need training in how to perform specific care tasks, such as administering medications and changing sterile dressings. Health literacy approaches are critical to ensuring that family caregivers know what to do, when to do it, how to do it, why they must do it, and what they should do if something seems off. Cultural competence initiatives can help equip staff to meet the cultural needs and preferences of people with dementia and their family members. See the guidance articles Health Literacy and Culturally and Linguistically Competent Care for more information.​