Management of the patient with dementia

INTRODUCTION — Advances in the understanding of the pathophysiology of neurodegenerative dementias hold promise for disease-specific and new disease-modifying treatments. However, at present, the majority of treatment is symptomatic management. In this regard, important management issues include treatment of behavioral disturbances, environmental manipulations to support function, and counseling with respect to safety issues. A close discussion with the patient's caregiver is essential.

Available options for the management of dementia are discussed here. This topic review will also discuss the recognition and management of safety and societal issues related to dementia, including decision-making capacity, driving, financial capacity, cooking, wandering and becoming lost, falls, and living alone.

The management of neuropsychiatric symptoms of dementia and palliative care of patients with advanced dementia are discussed separately.

●(See "Management of neuropsychiatric symptoms of dementia".)

●(See "Care of patients with advanced dementia".)

Other topic reviews discuss the evaluation of patients with cognitive impairment and dementia, as well as the risk factors for and prevention of dementia.

●(See "Evaluation of cognitive impairment and dementia".)

●(See "Risk factors for cognitive decline and dementia".)

●(See "Prevention of dementia".)

SPECIALTY-CARE REFERRAL — Timing of referral to a specialist depends upon the comfort and knowledge base of the primary care provider in managing dementia and upon the availability of specialty clinics where additional resources are available, such as social workers and neuropsychologists.

The first step in management is an accurate diagnosis of the type of dementia. Thus, one factor that would be important in considering patient referral is uncertainty about the diagnosis of an early dementia (eg, when difficulty arises distinguishing dementia from normal aging, depression, or encephalopathy), when a non-Alzheimer dementia is likely (early and severe behavioral changes, language problems, hallucinations, or parkinsonism), when there is a young onset (<65 years old), and when there is a strong family history. (See "Evaluation of cognitive impairment and dementia".)

In addition, patients with early Alzheimer disease (AD) are typically referred to a dementia specialist for consideration of disease-modifying therapies. (See "Treatment of Alzheimer disease".)

Finally, some patients benefit from multidisciplinary care. Patients with behavioral variant frontotemporal dementia (FTD), for example, may benefit from specialist care to manage disinhibition and other behavioral manifestations. Those with dementia with Lewy bodies also generally require specialty care to manage complex motor and nonmotor symptoms.

MEDICAL THERAPY — The management of medical problems can be more complex in patients with dementia [1]. Patients with dementia have a decreased ability to make decisions, to adhere to treatment plans (including medication compliance), and to report adverse effects of therapy [2,3].

Disease-specific treatments — Issues specific to the management of specific dementia syndromes are discussed in individual topic reviews. As examples:

●(See "Treatment of Alzheimer disease".)

●(See "Prognosis and treatment of dementia with Lewy bodies".)

●(See "Treatment of vascular cognitive impairment and dementia".)

●(See "Frontotemporal dementia: Treatment".)

Neuropsychiatric symptoms — Patients with behavioral disturbances and/or other neuropsychiatric symptoms require evaluation for underlying causes and may subsequently benefit from symptomatic management. This is discussed in detail separately. (See "Management of neuropsychiatric symptoms of dementia" and "Sleep-wake disturbances and sleep disorders in patients with dementia".)

Vascular risk factor control — Identification and treatment of risk factors for stroke, cardiovascular disease, and dementia may represent an important strategy for decreasing the incidence of dementia and for slowing the progression of cognitive decline, particularly for patients with vascular dementia and also for those with Alzheimer disease (AD). (See "Treatment of vascular cognitive impairment and dementia", section on 'Vascular risk modification' and "Treatment of Alzheimer disease", section on 'Vascular risk factor management'.)

While control of vascular risk factors may delay or prevent cognitive decline in at-risk adults, data on managing vascular risk for patients with dementia are not entirely consistent. Additionally, there are potential harms to overly aggressive risk factor management [4]. As an example, one study in 172 patients with dementia or mild cognitive impairment (MCI) found that Mini-Mental State Examination (MMSE) scores declined fastest in patients being treated with antihypertensive drugs who had the lowest tertile of daytime systolic blood pressures (≤128 mmHg) [5]. Orthostatic hypotension associated with overly aggressive blood pressure management is also of concern, particularly in patients with Parkinson disease (PD), who may have a measurable decline in cognition when standing [6]. We therefore suggest attention to standing blood pressure in patients with dementia who are being treated for hypertension.

These topics as they relate to the incidence and prevention of dementia are discussed separately. (See "Risk factors for cognitive decline and dementia" and "Prevention of dementia".)

Avoiding adverse drug effects — Adverse effects of prescribed medications can contribute to cognitive impairment and exacerbate dementia. In patients with dementia, it is important to periodically review the patient's drug regimen, use the minimal dose required to obtain clinical benefit, discontinue unnecessary therapies, consider adverse drug effects as a cause of a new symptom before prescribing another drug, and consider nonpharmacologic approaches when appropriate. Patients with dementia have a decreased ability to report adverse effects of therapy, requiring additional vigilance on the part of the clinician [2,3]. A systematic approach to drug prescribing in older patients is described separately. (See "Drug prescribing for older adults", section on 'A stepwise approach to prescribing' and "Deprescribing".)

●Polypharmacy – Polypharmacy is very common in older adults, who may have multiple medical conditions and are at increased risk for adverse drug events due to metabolic changes and decreased drug clearance associated with aging. These risks are compounded by an increasing number of drugs used. A diagnosis of dementia adds further vulnerability, not only to cognitive side effects but also to effects of drugs on balance, motor function, and bladder control. Any clinician who makes a medication change should notify all other clinicians who are actively following the patient, even if notes are auto-forwarded and/or if there is a common medication list.

Patients with dementia are also at risk for prescribing cascades, which occur when a new drug is prescribed to treat symptoms arising from an unrecognized side effect of an existing therapy. One common example relevant to patients with dementia is prescription of an anticholinergic therapy (eg, oxybutynin) to treat incontinence that develops after prescription of a cholinesterase inhibitor. (See "Drug prescribing for older adults", section on 'Prescribing cascades'.)

●Drugs that can exacerbate impairment – Drugs of particular concern in adults with dementia include anticholinergic drugs (table 1), benzodiazepines, opioids, antipsychotic drugs, and antihypertensive drugs, especially in patients with PD and other disorders associated with autonomic dysfunction.

Despite these risks, data suggest that older adults with dementia are commonly prescribed potentially unsafe medications. In analysis of United States medication expenditures between 2005 and 2009, 23 percent of community-dwelling persons >65 years with dementia were prescribed medications with clinically significant anticholinergic activity [7]. In another large study that included over 75,000 adults with dementia in the United States Department of Veterans Affairs (VA) system, 44 percent of patients were prescribed at least one potentially unsafe medication (mostly drugs with high anticholinergic activity), and rates were consistently higher among patients receiving care from multiple providers (inside and outside the VA system) [8]. (See "Drug prescribing for older adults", section on 'Inappropriate medications'.)

NONPHARMACOLOGIC THERAPY AND SUPPORTIVE CARE

Nutrition — Weight changes in either direction can occur in patients with dementia, particularly in more advanced stages. Excessive weight gain is less common but may result from overuse of supplements or disinhibition; in such patients, monitoring and restricting high caloric intake may be needed to maintain a healthy body weight. For both subsets of patients, consultation with a dietician may help in optimizing the patient's nutritional intake.

Inadequate nutrition is associated with increased morbidity and mortality [9]. Initial steps to increase nutritional intake can include environmental modifications such as providing a relaxed, home-style setting and having the patient eat with other family members (or residents in long-term care facilities) rather than by themselves [10].

Decreased sense of smell is common in patients with dementia (especially dementia with Lewy bodies) and can contribute to poor appetite and weight loss. This can sometimes be overcome by increasing other types of sensory stimulation. As an example, caregivers can try adding low-sodium soy sauce or salsa to foods, or using recipes aimed at increasing the flavor content of meals. Another strategy is to increase foods and spices that alter the texture and feel of food in the mouth, such as pepper, paprika, ginger, mustards, or horseradish.

Subsequent interventions such as assisted feeding and oral nutritional supplements may improve weight and fat-free mass [11]. A systematic review found that provision of high-calorie supplements improved weight gain in patients with dementia; however, the limited available data did not support a benefit in regard to functional and survival outcomes [12]. Other interventions (appetite stimulants, assisted feeding) were less clearly associated with weight gain.

Despite these and other interventions, decreased food intake is common in patients with advanced dementia. Issues related to feeding problems and decisions regarding ongoing hand-feeding versus tube-feeding in patients with advanced dementia are discussed separately. (See "Care of patients with advanced dementia", section on 'Feeding and nutrition'.)

Geriatric care managers — Geriatric care managers, usually specially trained nurses or social workers, provide a key service in a geriatric referral practice [13]. They offer guidance to patients and families regarding how to anticipate the need for in-home or nursing home care and are knowledgeable about community resources, health benefits, and caregiver support services. They can also help families connect with legal resources to assist in financial and other decisions, such as appointing power of attorney, developing a financial plan, and managing advanced directives. The Eldercare Locator can provide a list of geriatric care managers based on location. When such care managers are not locally available or are too costly, the Alzheimer's Association, clinical social workers, and other case managers may be able to assist with such functions.

Rehabilitation — The multidisciplinary, nonpharmacologic approaches to management of dementia discussed in this section have significant advantages in having none of the side effects that significantly complicate drug treatment in this patient population. However, more research is needed to confirm benefits seen in these trials and to provide a standardized approach that can be applied in the general community.

Exercise programs — We encourage our patients with dementia to participate in regular exercise programs. A regular walk with a family member or caregiver, preferably three or more times per week, or an exercise program at a senior center can be beneficial to patients.

Several small randomized studies have demonstrated that formal exercise programs may improve physical functioning or at least slow the progression of functional decline in patients with Alzheimer disease (AD) [14-17]; one also found reduced falls [17]. At the same time, these studies did not find that exercise programs improved cognitive functioning in adults with dementia, at least over the study duration [14-19].

Other studies suggest a modest benefit of exercise in mild cognitive impairment (MCI), at least in the short term. These are discussed separately. (See "Mild cognitive impairment: Prognosis and treatment", section on 'Exercise'.)

Occupational therapy — Occupational therapy is most likely to benefit patients when centers have a specific program designed for patients with dementia; such programs require specific training for the therapist. In the absence of this expertise, occupational therapy has an uncertain benefit.

In a randomized trial, 68 of 135 community-dwelling patients with mild to moderate dementia were assigned to receive 10 sessions of occupational therapy over five weeks [20]. Individualized therapy sessions focused on training patients and caregivers in the use of aids, coping behaviors, and other strategies to compensate for those functional deficits that were specifically problematic for the patient. Assessments of motor and process skills and activities of daily living (ADLs) were significantly improved compared with controls, both at six weeks and at three months, implying that the treatment has some durability. The intervention also appeared to be cost effective, specifically reducing costs of informal caregiving [21].

Cognitive rehabilitation — Cognitive rehabilitation aims to help patients in the early stages of dementia to maintain memory and higher cognitive function and to devise strategies to compensate for declining function. While studies suggest that these approaches are feasible and have potential benefit, it will be critical to show that observed improvements impact quality of life before such treatments can be routinely recommended.

Studies regarding the efficacy of this approach are limited by the lack of standardized techniques. A 2012 systematic review concluded that while studies have provided evidence that cognitive stimulation programs improve cognition, their variable quality and unclear generalizability beyond the specific cognitive task limit firm conclusions [22]. It will be critical to show that improvements extend to other real-life tasks before these interventions can be endorsed. In general, cognitive rehabilitation is most efficacious when it is part of a multidomain intervention including exercise, diet, and addressing vascular risk factors [23].

Alcohol use — Alcohol can exacerbate cognitive dysfunction and behavioral disturbance in patients with dementia. Patients with dementia, particularly those with mild AD, can sometimes drink to excess because they lose track of how many drinks have been consumed.

We typically advise patients and caregivers to limit alcohol consumption to low amounts (eg, one drink per sitting) and avoid after-dinner alcohol completely because of its detrimental effects on sleep. (See "Management of neuropsychiatric symptoms of dementia", section on 'Sleep disorders'.)

CAPACITY — Patients with dementia have a decreased ability to make decisions. This is an important issue as these patients become increasingly unable to make decisions for themselves. A capacity assessment is a process that can be facilitated by geriatric care managers and social workers. It may start with designating the caregiver as having durable power of attorney for medical decision-making all the way to formal conservatorship.

Decision-making capacity — Any illness or treatment that compromises cognition may be associated with reduced capacity. Decision-making capacity is broadly applicable and includes activities such as deciding how to interact with strangers, planning and prioritizing activities, and considering the choices in accepting medical therapy.

The likelihood of diminished capacity is related to the severity of cognitive impairment. However, brief measures of overall cognition such as the Mini-Mental State Examination (MMSE) are not a substitute for an assessment of capacity. While low scores (eg, <16 out of 30 points) in patients with dementia due to Alzheimer disease (AD) are highly correlated with impaired capacity, a higher score may or may not correlate with full capacity to make decisions. Among patients with mild- to moderate-stage dementia, verbal reasoning and verbal memory are the two cognitive domains that explain most of the performance on measures of capacity to consent. Measures of an individual's insight into their memory problems also correlate with decision-making capacity.

These and other issues related to the assessment of decision-making capacity in adults with dementia are reviewed separately. (See "Assessment of decision-making capacity in adults".)

Financial capacity — Financial capacity has been defined as the "ability to independently manage one's financial affairs in a manner consistent with personal self-interest" [24]. Patients with cognitive impairment are at high risk for being exploited by financial scams, particularly as finances are managed more and more online. A number of strategies have been identified to protect at-risk elders, but managing all financial matters with a trusted partner, often a family member, is a reasonable first step. Other resources include:

●The Alzheimer's Society's advice on how to spot a financial scam

●The Alzheimer's Association's guidance on scams, fraud, and crime

●The United States National Institutes of Health's caregiving topic on managing money problems in AD

●The United States Office for Victims of Crime's National Elder Fraud Hotline

Because impaired financial capacity can occur early in the course of dementia and is inevitable in all patients, it should be addressed relatively early after diagnosis with the patient and family or caregiver [25-28]. Recommendations include execution of a durable power of attorney, which can take effect immediately or in the future after impaired capacity has been demonstrated. Where available, there are dedicated financial planners and attorneys who specialize in helping older and cognitively impaired patients. Other practical interventions can include online banking, direct deposit, automatic bill pay, joint bank accounts, overdraft protections, and the use of living trusts [29].

While certain neuropsychological tests can help assess financial capacity (eg, Financial Capacity Instrument) [27], none of these instruments are well validated against financial outcomes or are likely to be, and none substitute for oversight from a trusted caregiver. When the latter is not available, a court-appointed conservator or guardian may need to be appointed. (See "Elder abuse, self-neglect, and related phenomena", section on 'Guardianship'.)

Patients and caregivers can be referred to the Alzheimer's Association (1-800-272-3900) for referrals regarding financial or legal planning. Other resources include the American Association of Retired Persons (AARP; 1-888-687-2277 [English] and 1-877-342-2277 [Spanish]) and the National Council on Aging BenefitsCheckUp service (1-202-479-1200).

Advance care planning — Advance care planning is critical to the management of patients with advanced dementia and should occur throughout the disease process [30,31].

The standard components of advance care planning apply to advanced dementia and are discussed separately. (See "Advance care planning and advance directives".)

In patients with dementia, we emphasize the following [32,33]:

●Start early. Ideally, these discussions should begin before the patient loses decision-making capacity, thus allowing the individual to participate and articulate their wishes. Patients should be advised to appoint a health care proxy early in the process. (See "Assessment of decision-making capacity in adults".)

●Talk about what is to come. As dementia progresses, patients experience loss of cognition and the ability to perform tasks of daily living.

Common issues for many patients with dementia are decisions around continuing to live at home, the need for in-home help, moving into an assisted living environment, and/or admission to a nursing home.

Later in the disease course, patients with dementia will incur loss of basic bodily functions, particularly the ability to swallow and to fight infections. These complications are the most common proximate causes of death in advanced dementia. Later in the process, a Medical Orders for Life-Sustaining Treatment (MOLST) form can be helpful in addressing advance directives in a more granular manner.

●As the disease progresses, referral for a palliative care consult can be helpful for families and caregivers. These conversations should occur in a stage-appropriate manner from the initial diagnosis. (See "Discussing goals of care".)

Consider using a structured conversation guide and written materials tailored to patients and caregivers with dementia [31,34]. Publicly available online resources include printable guides developed by the Conversation Project [34].

SUPPORT FOR CAREGIVERS — Caregivers of patients with dementia can suffer significant stress, particularly as cognitive function declines or behavioral symptoms worsen [35]. Counseling and participation in support groups can be beneficial. It is also helpful to encourage the caregiver to get help in sharing the caregiving burden with other family members or, if affordable, paid caregivers. Respite care and elder daycare may also be of benefit in providing a period of relief for caregivers [36] so that they can come back refreshed and rested. Social workers in the dementia clinic may be able to meet directly with caregivers to offer support or provide information on caregiver resources. Respite care, daycare, and other day programs are available in most areas, often through the local agency on aging. In the United States, information can be obtained from the Alzheimer's Association at 1-800-272-3900.

While uncommon, caregivers can also become so frustrated with the constant vigilance required for care of the patient with dementia that they may verbally or physically abuse the patient. In either case, health care practitioners are mandated reporters and should notify older adult protection services. (See "Management of neuropsychiatric symptoms of dementia", section on 'Support for caregivers'.)

A variety of caregiver intervention studies have been performed, assessing both short-term and long-term outcomes, with mixed results. Most, but not all, have shown that counseling and support interventions benefit caregivers in the short term as measured by a reduction in stress and improvement in emotional wellbeing and quality of life [37-40]. As an example, a randomized trial that included 260 caregivers of individuals with dementia found that an eight-session educational program was associated with decreased caregiver anxiety and depression scores and improved quality of life over an eight-month period [39]. A randomized study using a different intervention (access to a volunteer "befriender" trained to give psychosocial support to caregivers) was less successful, and the majority of caregivers in the intervention group did not make use of the volunteer [38].

Studies suggest that optimizing caregiver support might also help to keep patients with dementia cared for in the home and may reduce emergency department visits [40,41]. A meta-analysis of 13 studies of support programs for caregivers found that interventions designed to provide support for caregivers decreased the odds of institutionalization [41]. Among the heterogeneous and usually multicomponent interventions used, no specific type stood out as most effective. However, those that allowed individualization and choice by the caregiver seemed more effective than those that were more rigorously standardized.

In the United States, information can be obtained from the Alzheimer's Association at 1-800-272-3900. Information regarding frontotemporal dementia (FTD) can be found at the Association for Frontotemporal Degeneration.

SAFETY ISSUES — Safety issues are important aspects of the care of patients with dementia. Different safety concerns arise in a relatively predictable manner as dementia progresses. Addressing these issues proactively can prevent serious incidents.

Driving — It is important to ask patients whether they are driving and address safety concerns, with the goal of assessing whether driving can continue safely.

Discussions of driving cessation are challenging. Surrendering a license often represents a severe loss of independence. Patients are generally unaware of their deficits (particularly their deficits in judgment) and are not accurate assessors of their driving ability. With early diagnosis, many patients with mild dementia will still be able to drive safely for a period of time, but all will eventually progress to the point where it is no longer safe to drive.

●Driving risks in patients with dementia – The magnitude of the risk of driving in patients with early dementia is uncertain. In one survey, individuals with Alzheimer disease (AD) in the first year after diagnosis had a similar mean rate of crashes to that of registered drivers of all ages, although higher than that of age-matched controls [42]. However, the risk of crashes rose in the following years after the diagnosis of AD. Other studies have reported a higher rate of crashes with dementia [43]. One problem is that statistics of motor vehicle accidents may underrepresent the risk since older patients substantially reduce their driving [44].

However, studies of driving evaluations consistently demonstrate worse performance in patients with dementia compared with age-matched controls [43,44]. Impaired driving safety is associated with the degree of cognitive impairment as measured by neuropsychological test performance, in particular measures of overall cognition as well as more specific measures of visual perception and motor function [45,46]. As an example, in one prospective cohort study, older individuals who took more than 147 seconds to complete the Trails B test and those who took more than 352 milliseconds on the Useful Field of View subtest 2 were more than twice as likely to be involved in an at-fault motor vehicle accident [46].

●Predictors of unsafe driving – A systematic review of studies that evaluated predictors of driving capacity in persons with dementia found that the clinical dementia rating (CDR) scale (table 2) had the best evidence of utility in evaluating driving safety [47]. Drivers with a CDR = 0 are, in general, safe to drive; patients with a CDR = 2 are considered unsafe to drive. Patients with a CDR of 0.5 or 1 have a higher risk of unsafe driving compared with those with a CDR = 0, but a substantial proportion (41 to 85 percent) will be judged to be safe drivers by an on-road driving evaluation.

Other predictors of unsafe driving have been identified [47]. It is important to note that these are more helpful in identifying drivers at risk; their absence does not identify a safe driver. Predictors of unsafe driving include:

•Recent (one to five years) history of motor vehicle accident or citation

•Self-restricted driving

•Aggressive or impulsive behaviors

•Caregiver's assessment of marginal or unsafe driving

•Mini-Mental State Examination (MMSE) score of 24 or less

●Recommendations for patients, families, and caregivers – An American Academy of Neurology practice parameter suggests an algorithm for evaluating driving safety in patients with dementia based upon the CDR (table 2) [47]:

•Patients with a CDR = 2 are at high risk for unsafe driving. Patients and caregivers should be counseled to stop driving and interventions should be made pursuant to state guidelines unless the results of a driving assessment show retained capacity.

•Patients with a CDR = 0.5 or 1 are at intermediate risk for unsafe driving. Considering this along with the other risk factors noted above, patients, families, and caregivers should be encouraged to develop alternative sources of transportation, consider voluntary surrender of driving privileges if there are significant safety concerns, and limit driving to daylight hours, to well-known locations, and to when driving conditions are good. Providers should consider a referral for a professional driving evaluation.

In general, there is no perfect correlation with bedside mental status tests and driving ability. Depending on the cognitive domains affected, some patients may have predominant impairments in attentional systems, reaction time, visuospatial abilities, or executive function despite low CDR scores. In patients with CDRs of 0.5 to 1, it is often helpful to have them tested at on-the-road driving programs or some virtual programs dedicated to assessing driving ability.

Although a number of driving safety tests have been suggested, randomized studies have not been performed and no guidelines have been broadly implemented [48-51]. Observational data suggest that states with in-person renewal laws and/or mandatory road-side tests for older drivers have a lower proportion of dementia among hospitalized drivers after motor vehicle crashes, suggesting that such programs reduce the risk of dementia-related motor vehicle accidents [52]. Patients should be informed that even if they pass a driving evaluation, they will need to be retested at regular intervals as their disease progresses. Families and caregivers must be warned about potential liability for accidents. They may need to take possession of car keys, or even the cars, and restrict all driving.

Impaired cognition is only one factor limiting driving in older persons. Medications and sleep disorders, along with visual and motor impairments, should also be considered in assessing driving safety [47]. This topic is discussed in detail separately. (See "Approach to the evaluation of older drivers".)

●Reporting requirements – Mandatory reporting of dementia is required in some states in the United States (eg, California, Pennsylvania) as well as certain provinces in Canada and Australia [53]; however, these have not been shown to reduce the risk of dementia-related motor vehicle accidents [52]. It is important to remember that, where there are mandatory reporting laws, the clinicians need to familiarize themselves with the requirements of the law and report accordingly.

Falls — Falls are a major safety problem in some dementia syndromes, even early in the disease. The possibility of a parkinsonian syndrome should be considered if patients fall early in the course of illness. Whenever a patient is suspected of being a fall risk, a gait assessment is mandatory and can be done through a physical therapy consultation.

Falls eventually become a problem in all dementias. In one study of 1608 Swedish persons above the age of 75, the risk of hip fracture was twice as high when the score on the MMSE was suggestive of cognitive impairment (score 18 to 23) compared with those who had no impairment [54]. (See "The mental status examination in adults", section on 'Cognitive screening tests'.)

Patients who fall require careful evaluation to determine the etiology, with special attention to the possibility of a myelopathy (from cervical spondylosis or vitamin B12 deficiency), a peripheral neuropathy, or visual impairment. (See "Falls in older persons: Risk factors and patient evaluation".)

In addition, the patient's environment should be reviewed for stairs, loose carpets, cluttered areas, and other factors that promote falls. A physical therapy assessment can help in determining whether the patient needs a walking aid such as a cane or a walker. Remote cameras and passive fall detection can increase safety for patients who are left unsupervised.

Behavioral disturbances — Behavioral disturbances can profoundly affect patients with dementia as well as their families and caregivers. Recognition and treatment of delusions, hallucinations, depression, agitation, aggression, and sleep disturbances are important aspects of the care of patients with dementia. This topic is discussed separately. (See "Management of neuropsychiatric symptoms of dementia" and "Sleep-wake disturbances and sleep disorders in patients with dementia".)

Wandering and becoming lost — Distractibility and restlessness may lead a patient with dementia to wander. Memory loss and spatial impairment can cause a wandering patient to get lost, which has the potential for physical harm or death [55-59]. This is one of the concerns that often leads families and caregivers to place patients in nursing homes.

●Risks – Becoming lost appears to be a highly unpredictable event and can occur even when individuals with dementia are in their own homes or are engaged in activities they had routinely performed many times in the past without incident.

Wandering and becoming lost has potential for physical harm or death. The risk of death is increased if the person ends up secluded in natural or sparsely populated areas [57]. Approximately 91 percent of persons with dementia who died were found in natural areas such as woods, fields, and bodies of water (nearly 22 percent drowned). The risk of death also appears to be associated with the hottest and coldest times of the year. The time it took to search for and locate a missing person with dementia also correlated with the risk of death; most individuals found alive were located within 24 hours, and all were found within four days.

All persons with dementia are at risk of becoming lost [59].

•The risk may be higher for men than for women.

•Individuals residing in professional care settings are at risk, as are those at home.

•The risk of becoming lost is increased when patients are unattended, even in their own residences [59]. However, approximately 65 percent of people with dementia are in the presence of a caregiver at the time they become lost.

•Wandering is only one risk factor for getting lost; individuals who had never wandered can become lost.

●Preventive measures – Caregivers must be informed that all persons with dementia are at risk of becoming lost, even if the individual has never wandered or exhibited "risky" behavior in the past [59]. Signs on doors may reorient patients, and alarms may control movement. Regular supervised exercise can also lessen restlessness and the drive to wander.

Every effort should be made to ensure continuous supervision. Community resources, adult daycare and respite care facilities, and caregiver support groups may be utilized, if available, to reduce the burden on families and caregivers.

There are a number of commercially available tracking devices that use the global positioning system (GPS).

Patients should carry identification, as persons with dementia often cannot remember their address, phone number, or possibly even their name. This information can facilitate return if a patient is lost. The Alzheimer's Association along with MedicAlert administers a 24/7 Wandering Support program with identification bracelet, necklace, or clothing tags and 24-hour assistance for patients who are enrolled in this program.

Newer technologies can allow caregivers to monitor the location of patients in real time either via fairly expensive GPS tracking solutions or through less expensive devices that use networks, such as Tile devices and AirTags. These devices can work well in populated areas, but they do not have the accuracy of GPS in sparsely populated areas or in the wilderness.

●When a patient is lost – Caregivers should report the person missing immediately to local authorities (and to Wandering Support if registered).

Locating a person with dementia who becomes lost can be difficult [59]. People with dementia often behave in an unpredictable manner, rarely call for help or respond to searcher's calls, and often continue to wander. Search strategies should not be based on the individual characteristics of the missing person, since the unpredictable and abnormal behavior may negate any prior individual patterns [59].

The initial 6 to 12 hours of the search should cover a five-mile radius around the location where the lost person was last seen, concentrating on open, populated areas, including the inside of easily accessible buildings. If the person with dementia traveled by automobile, initial search efforts should focus on locating the vehicle. Subsequent efforts should be devoted to an intensive foot search of natural and sparsely populated areas beginning within a five-mile radius of the last known location and extending from there.

Home safety — The most important safety assessment is the evaluation of the home situation. Discussion of the home environment should focus on whether the environment is physically safe in regard to self-injury or falls and also whether it is a calm and nonstressful environment. The Alzheimer's Association provides information on home safety for persons with dementia. Visiting nurses can also perform a home safety evaluation if needed.

Cooking — Distractibility, forgetfulness, or difficulty following directions could lead to injuries, burns, or fires during cooking.

We recommend early use of microwave ovens, particularly if the patient is unfamiliar with their use and may require instruction. Learning to use a new device will be easier early in the disease process.

Cutoff devices can be installed by the gas company or a plumber to prevent the use of a stove by a patient with specific memory loss.

Being alone — Living alone presents additional risks for people with cognitive impairment and dementia, as self-neglect, disorientation, and poor judgment may go unrecognized and unreported until there is a major problem or crisis [60]. However, few data exist regarding this population. The lack of data is exacerbated by the symptoms of cognitive impairment, which may cause this population to become disconnected from family, friends, and the health care system [60].

Identifying risk factors for harm in patients with dementia who live alone is an important goal. This problem was addressed by a prospective cohort study of 139 patients aged 65 or older with cognitive impairments who lived alone and were followed for 18 months [61]. Harm was defined as an episode of physical injury to self or others, or property loss or damage due to self-neglect or disorientation, resulting in need for emergency services. Four variables were significantly predictive of harm:

●Self-perception of fewer social resources

●Poorer performance on cognitive evaluations such as the Montreal Cognitive Assessment (MoCA) or MMSE

●Presence of chronic obstructive pulmonary disease

●Presence of cerebrovascular disease

Over the course of 18 months, 30 (22 percent) of the participants had an incident of harm; the most frequent was failure to eat and drink in nine cases. Only one incident of smoke damage and no incidents of wandering occurred, perhaps due to the small population size and relatively short period of follow-up. Further studies with larger sample sizes are needed to confirm the results of this investigation and to provide clinicians with reliable predictors of harm for patients with cognitive impairments who live alone.

If a clinician has reason to believe that a patient is in a state of self-neglect, appropriate reporting should be promptly initiated. Adult protective services agencies and the courts are obliged to use the least-restrictive alternative when an individual's autonomy is impacted in order to protect that person. Recognition and management of elder mistreatment, which includes self-neglect, is reviewed in more detail separately. (See "Elder abuse, self-neglect, and related phenomena".)

The decision to care for a patient at home versus in an assisted living or nursing home environment is based on patient and family preferences, financial constraints, and safety challenges that arise. Discussion of care environment should occur early and often during the course of dementia. Early discussions involving the patient and caregiver should identify long-term goals for the care environment and put support systems in place to help with these goals. Living situations that can accommodate patients even if there is a decline, such as assisted living facilities with memory units, allow for more stability without having to relocate patients as they decline. Case managers and social workers can help in the assessment of independent living and whether escalating care to an assisted living facility or a skilled nursing home is indicated.

For patients with more advanced dementia, the current living situation and discussion of a need for higher levels of care should be frequently reviewed.

END-OF-LIFE ISSUES — In the terminal stages of dementia, patients and their caregivers are faced with a range of physical and psychosocial needs. Effective palliative care can improve patients' symptoms, lessen caregiver burden, and help ensure that treatment decisions are well informed and weighed in the context of patient and caregiver goals and needs. Aspects of palliative care that are specific to patients with advanced dementia are discussed separately. (See "Care of patients with advanced dementia".)

It is important that advance care planning begins shortly after the diagnosis of dementia when impairments are not advanced. In this way, patients can participate in decision-making, and families and caregivers know what to expect. Specific aspects of this planning are discussed in detail separately. (See "Care of patients with advanced dementia", section on 'Advance care planning'.)

LIFE EXPECTANCY — Dementia shortens life expectancy, although actual survival estimates have varied in different reports. Length bias complicates the interpretation of many studies by failing to consider patients with rapidly progressive illness who died before they could be included in the study. Another complicating factor is that patients are diagnosed at different stages in their illness, and actuarial life expectancy can be very different in subjects in their 80s and 90s.

In a study that adjusted for length bias, a random sample of 10,263 subjects age 65 and older from the Canadian Study of Health and Aging were screened for dementia and followed for five years [62]. The adjusted median survival for patients with probable Alzheimer disease (AD), possible AD, and vascular dementia was 3.1, 3.5, and 3.3 years, respectively. Among those with late-onset AD (>65 years of age), a younger age at onset was associated with longer survival, a finding consistent with prospective follow-up of participants in the Baltimore Longitudinal Study of Aging who were age 55 years and older [63]. In this report, the median survival of patients with AD ranged from almost nine years for patients diagnosed at age 65 (an approximate 67 percent reduction in median lifespan) to approximately three years for those diagnosed at age 90 (a 39 percent reduction in median survival).

These estimates will vary depending upon individual patient characteristics. Patients with dementia are more likely to be hospitalized than age-matched controls [64-67]. In one longitudinal cohort study, individuals with dementia had higher rates of hospital admission for bacterial pneumonia, congestive heart failure, dehydration, duodenal ulcer, and urinary tract infections, among other diagnoses, compared with those who did not have dementia [68]. Pneumonia, febrile episodes, delirium, and eating problems are common in advanced dementia and are associated with increased mortality [30], although accurate prediction of survival in patients with advanced dementia remains difficult. (See "Care of patients with advanced dementia", section on 'Predicted life expectancy'.)

End-of-life issues, hospice, and palliative care in patients with advanced dementia are discussed separately. (See "Care of patients with advanced dementia".)

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Cognitive impairment and dementia".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Basics topics (see "Patient education: Dementia (including Alzheimer disease) (The Basics)" and "Patient education: Caring for someone with Alzheimer disease or dementia (The Basics)")

●Beyond the Basics topics (see "Patient education: Dementia (including Alzheimer disease) (Beyond the Basics)")

SUMMARY AND RECOMMENDATIONS

●Specialty referral – The first step in management is an accurate diagnosis of the type of dementia. Thus, uncertainty about the specific diagnosis requires early referral to a specialist. Other indications for specialty referral depend upon the experience of the primary care provider in managing dementia and on the availability of specialty clinics where additional resources and/or new disease-modifying treatments are available. (See 'Specialty-care referral' above.)

●Medical care – Medical treatment of patients with dementia includes disease-specific medical treatments when appropriate and management of vascular risk factors.

It is important to limit polypharmacy and avoid medications, particularly those with anticholinergic properties, that can affect cognition (table 1). Medication lists should be reviewed periodically for necessity, and new drugs should be prescribed with caution. (See 'Medical therapy' above.)

While nonpharmacologic approaches have advantages in avoiding side effects that complicate drug treatment, more research is needed to confirm benefits and to provide a standardized approach. (See 'Nonpharmacologic therapy and supportive care' above.)

●Behavioral disturbances – Aggressive behavior may present a risk to the caregiver as well as to the patient. Caregivers may be embarrassed to volunteer this problem, and this history should be solicited. The management of aggressive behavior and other neuropsychiatric symptoms is discussed separately. (See "Management of neuropsychiatric symptoms of dementia".)

●Decision-making capacity – In the presence of cognitive impairment, determining whether a patient has adequate capacity is critical to striking the proper balance between respecting patient autonomy and acting in a patient's best interests. Brief tests of cognition in patients with dementia are not a substitute for a formal assessment of capacity. (See "Assessment of decision-making capacity in adults".)

Because diminished capacity is inevitable, advance care planning is critical. Discussions should begin early in the disease process, when possible. (See 'Advance care planning' above.)

●Driving – Driving becomes unsafe as cognition deteriorates. Patients with a clinical dementia rating (CDR) score ≥2 are considered unsafe to drive (table 2). Patients with a CDR = 0.5 or 1 should undergo further risk assessment, based upon identified risk factors and/or an on-road driving evaluation. (See 'Driving' above.)

●Wandering – Some patients with dementia wander and may become lost, with an attendant risk of personal harm and even death. This can occur when a patient lives at home and when residing in a professional care center. Supervision, identification tags, and registration with Wandering Support or similar programs may ameliorate risk. (See 'Wandering and becoming lost' above.)

●Falls – Falls eventually become a problem in all dementias but can be a problem early on in the dementias that are associated with parkinsonism (eg, dementia with Lewy bodies, Parkinson disease [PD] dementia). Patients and caregivers should be asked about falling, which may be an indication for providing increased supervision. (See 'Falls' above.)

●Caregiver support – Caregivers of patients with dementia can suffer significant stress. Respite care and support groups are available in most areas, often through the local agency on aging. (See "Management of neuropsychiatric symptoms of dementia", section on 'Support for caregivers'.)

●End-of-life issues – Advance directives and other advance care planning should be discussed prior to the onset of moderate or severe dementia, when possible. Palliative and hospice care can benefit patients with severe dementia at the end of their lives. (See "Care of patients with advanced dementia".)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Michael Alexander, MD, who contributed to earlier versions of this topic review.