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¹ The panel’s paper is available at https://www.nationalacademies.org/our-work/decadal-survey-of-behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimers-disease-related-dementias.

²https://www.nationalacademies.org/event/10-17-2019/meeting-2-decadal-survey-of-behavioral-and-social-science-research-on-alzheimers-disease-and-alzheimers-disease-related-dementias

with dementia. The chapter closes with a discussion of research directions for each of these areas.

PERSPECTIVES ON LIVING WITH DEMENTIA

Prior work offers important insights into possible gaps in research relevant to living with dementia. For example, the 2020 National Research Summit offered recommendations drafted by its Persons Living with Dementia Stakeholder Group (2020). Examples include the call for research on how disparities affect the experience of living with dementia; how finances affect choices about diagnosis, treatment, and research participation; and methods for improving the quality of end-of-life care. In addition to reviewing this prior work, the committee wished to hear directly from individuals living with dementia, and we appreciated the opportunities to integrate the advisory panel’s perspectives throughout this study. This small group of people provided us with a snapshot of their own experiences, responded to our questions, and participated in public workshop discussions. The panel also provided a thoughtful summation of the perspectives of a larger group of people living with dementia and family caregivers gathered through the call for commentaries (Huling Hummel et al., 2020). The advisory panel made an invaluable contribution to our understanding, primarily of the perspectives of individuals in the early stages of disease and family caregivers. It is important to note that insights into the experiences of individuals at advanced stages of disease are much less accessible because at those stages, dementia can limit people’s capacity to articulate their thoughts and feelings (Reuben, 2019).

The advisory panel identified four themes as primary challenges for persons living with dementia:

1. problems in obtaining an accurate and timely dementia diagnosis,
2. problems in obtaining needed supports and services,
3. communication challenges with doctors and other health care professionals, and
4. fear and loss.

The panel’s perspectives on these challenges are summarized below.

Problems in Obtaining an Accurate and Timely Dementia Diagnosis

Respondents to the call for commentaries and members of the advisory panel repeatedly noted frustration with the diagnostic process. They pointed out that many primary care physicians lack the expertise to diagnose dementia accurately, an issue that may be particularly important for

the small minority of people who show signs of dementia before age 65. They suggested that many physicians believe that receiving a dementia diagnosis is either inconsequential because there is no remedy or actually harmful to patients. While there may be people who would prefer not to be told, multiple respondents reported that delays in receiving a diagnosis caused harm to themselves or loved ones. Respondents also expressed the view that delays in diagnosis reflect skepticism about reported symptoms (“My doctor did not believe me. My primary physician thought my problems were all due to the high stress of my position.”). Other delays resulted from diagnostic uncertainty (“It was difficult at first because with each new doctor I had a different diagnosis.”). One respondent reported, “I am a neurologist who retired early…. I sought medical help for my symptoms for 10 years prior to my diagnosis….” Other respondents encountered clinicians who were dismissive because of the lack of effective treatments (“When she pressed her doctor for more definitive diagnosis [after 2 years], she was told by her doctor, ‘Why bother, it won’t change your treatment approach.’”).

Errors and delays in diagnosis carried significant risks, as comments from caregivers suggested: “…Dad was confined to a psychiatric ward for a week after frightening family members with a gun because of terrifying hallucinations … a neuropsychiatrist finally diagnosed Dad with Lewy body dementia.” Delays in diagnosis also can have a significant economic impact, as one respondent noted: “It is important to receive a diagnosis as early as possible so you can leave work before you are fired due to performance issues that dementia inevitably causes. I was fired from my job, but I did not get diagnosed until 5 years later.”

Some respondents characterized the diagnostic experience as lacking in empathy: “What the doctor didn’t say out loud was, ‘Now get out of my office so I can see someone I can actually do something for.’”

Problems in Obtaining Supports and Services

Many respondents reported experiencing a disconnect between diagnosis and assessment and/or referral for services of any kind. One respondent noted, “When I first saw a neurologist he gave me a short test and a prescription, and that was that. He gave me no information about vascular dementia or any other [psychoeducational] resources at all. This is unacceptable for a terminal illness!” Others discovered that available services were inappropriate (“…support services are geared more toward care partners and not for those with the actual disease.”) or that potentially beneficial resources were unavailable: “My local ALZ Association will not allow me to participate in support groups or classes ‘without being accompanied by someone….’ I live alone and do not yet need a caregiver.”

frankly, knowledgeable.” “My biggest frustration is communicating with my Geriatric Specialist….”).

Fear and Loss

Survey respondents described many ways in which dementia brings both fear and loss. Financial concerns were cited frequently. These concerns included worry about being preyed upon financially (“Our accountant estimated that my Dad wrote checks worth tens of thousands of dollars to charities, bogus car warranty companies, scam lotteries and gold coin merchants and nearly lost his home due to non-payment of taxes.”). Another respondent stated, “I was forced to take a medical leave because of my symptoms and lost my employee health insurance 3 days before I turned 65, so I would not be entitled to a pension.” Many respondents noted the shocking expense of care they would need in the future and their inability to pay for services of sufficient quality to maintain their safety or dignity: “I live in fear of getting worse with no financial options for assisted living or memory care.”

Social isolation has long been a problem for older Americans but is significantly exacerbated by dementia. Bias from others and embarrassment about real or potential errors related to cognitive deficits can severely limit social opportunities. Sensitivity to noise can make public gatherings jarring and unpleasant. Cognitive impairment may slow responses in conversation and make old hobbies and sports activities difficult to pursue. As one respondent noted, “I am unable to pursue my hobbies. I would love to still have the right to work in my old job and not get paid for it.”

Some respondents addressed how the COVID-19 pandemic has exacerbated the problem of isolation. One said, “I miss my family and I’m very lonely and depressed.” Other findings, such as those from a nationwide survey of nursing home residents conducted in July and August 2020 (Montgomery et al., 2020), reinforce the impression that lack of contact was especially hard on older people living away from family.

Box 3-2 describes art programs available during the COVID-19 pandemic.

RESEARCH ON KEY ASPECTS OF LIVING WITH DEMENTIA

Researchers have provided insights relevant to many aspects of the experience of living with dementia, including those described by the advisory panel. The committee reviewed the state of the literature to identify priorities for future research in these areas. We could not address every aspect of life with dementia but identified a set of examples that reflect the diversity of relevant research. In the medical domain, we review challenges

in making and communicating the diagnosis of dementia. In the nonmedical domain, we summarize issues related to decision making, financial vulnerability, and sexuality. A host of other issues, including driving, medication management, and housing choices, are equally important, and we hope the examples discussed here may be used as a template for further work in additional domains.

Diagnosing Dementia³

Early and accurate diagnosis of dementia can be difficult. Most types of dementia develop slowly, but different types present different symptoms, and symptoms vary even among individuals experiencing the same type of dementia. Doctors who see patients for limited appointment times in an examining room may not be certain how to interpret symptoms and their relationship to other medical issues the patient may have. The lack of clarity is often very frustrating for patients and families. Clinicians and families also wonder about the ethics of disclosing a diagnosis for which there is limited treatment.

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³ This section draws on a paper commissioned by the committee (Bennett, 2020). That paper provides more detail about diagnosis and the types of dementia.

at least two areas of cognition in which there has been a decline severe enough to impair social or occupational functioning (McKhann et al., 2011; American Psychiatric Association, 2013). Blood tests and neuroimaging studies are used to check for treatable conditions that may cause cognitive impairment that mimics dementia.

Although these basic approaches to diagnosis are well known, studies have suggested that cognitive impairment is significantly underdiagnosed—indeed by one estimate, roughly half the population of individuals who have Alzheimer’s disease or a related dementia receive a formal diagnosis (Alzheimer’s Association, 2019). Early-stage dementia is least likely to be diagnosed, and Hispanic and non-Hispanic Black people are less likely to receive a diagnosis of mild cognitive impairment than are non-Hispanic White people (NASEM, 2021). Moreover, the effectiveness of diagnostic evaluation is limited by linguistic, educational, and cultural factors that affect the validity of results (Lewis et al., 2021; Jervis et al., 2010, 2018).⁴ For example, the results of functional questionnaires are influenced by context. Patients’ responses are affected by baseline levels of function, limitations related to motor or sensory changes, and degree of insight. Family members’ observational facility and cultural expectations, as well as cultural biases in the questionnaires themselves, also affect results (Jervis et al., 2018). Similarly, scores on cognitive tests are influenced by patients’ baseline cognitive performance, mood and effort, sensory and motor changes, and comfort level (which themselves are influenced by education and culture), and by linguistic and cultural biases in the tests themselves.

Diagnosis is complex in part because cognition is not a finite or unitary capacity: the evaluation covers multiple cognitive abilities, such as episodic memory (ability to encode and recall a story and/or list of words), language or semantic memory (capacity for naming and fluency), executive function (such capacities as planning, focusing attention, and self-monitoring needed to direct one’s own cognition), and perceptual speed and working memory (ability to hold and manipulate information in short-term memory stores). Moreover, it is common for people’s cognitive capacity to decline as they age: a degree of decline is accepted as a normal part of the aging process, although it may be the result of pathologic changes in the brain (Salthouse, 2019).

Cognitive loss occurs on a continuum. Cutpoints along that continuum identify points at which the decline can be classified as impairment, beginning with mild cognitive impairment, in which objective measures of cognition are abnormal but function is preserved, and progressing through stages of severity that increasingly have clinical consequences. Thus, mild

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⁴ Similarly, there is ongoing research examining whether biomarkers of Alzheimer’s disease differ by race, particularly among those with APOE 4-positive (Rajan et al., 2019).

cognitive impairment is a change in an individual’s cognition significant enough to be recognized as impairment but mild enough that the individual retains independence and functional abilities (Albert et al., 2011). A loss of cognition that impairs function is considered dementia. However, because cognitive impairment is defined primarily in terms of changes over time for the individual, clinicians use information about level of education, occupation, and other aspects of the individual’s life to set expectations for performance that can serve as the basis for assessing decline. Like the identification of a degree of decline that interferes with social or occupational functioning, these criteria are subjective and likely to be affected by cultural and other differences across populations, and thus are problematic for researchers and clinicians alike.

Today, dementia and its precursor, mild cognitive impairment, are diagnosed primarily based on clinical symptoms. Often, family members are the first to notice subtle early psychological and cognitive changes in their loved ones and bring them to a clinician’s attention. Researchers are beginning to evaluate whether information that can be collected unobtrusively (e.g., from website interactions, smartphones, and wearable devices) can be used to detect cognitive impairment or early dementia.⁵ There are also many tests that assess the neuropathology associated with Alzheimer’s disease and other forms of dementia, using such modalities as brain scanning technology that can reveal structural changes, deposits, or biochemical changes in the brain, or testing of cerebrospinal fluid for abnormal markers.⁶ These tests are valuable for research and can be used clinically to help distinguish one type of dementia from another, although they cannot be used for diagnosis of mild cognitive impairment or dementia, which is based on clinical symptoms, as discussed above. Such tests can detect signs of brain pathology even when no clinical symptoms are evident. Imaging, biomarker, and autopsy studies all indicate that many asymptomatic people have Alzheimer’s biomarkers. Not all such individuals will eventually develop dementia, and some biomarkers can be detected many years before any symptoms develop. In individuals with clinical evidence of mild cognitive impairment or dementia, these tests can be valuable in distinguishing Alzheimer’s disease from other dementias (e.g., frontotemporal degeneration, Lewy body dementia), and they can also be used to select individuals for trials of preventive strategies. Substantial progress has recently been made in the use of blood tests to measure biomarkers of Alzheimer’s disease, but the same limitations apply to these tests (Palmqvist et al., 2020).

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⁵https://www.betteraging.com/cognitive-aging/new-study-will-research-cognitive-health-using-apple-watch-iphone

⁶https://www.nia.nih.gov/health/biomarkers-dementia-detection-and-research

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⁷https://www.geron.org/images/gsa/Marketing/KAER/GSA_KAER-Toolkit_2020_Final.pdf

as other adults do while also providing appropriate and graduated levels of protection against harm—is the central ethical challenge posed by dementia.

Assessment of decision-making capacity must be tailored to individual circumstances; it cannot be based simply on the cutpoints for cognitive test results. While research has addressed how to evaluate decisional capacity for research and treatment purposes, there is no standard practice for capacity assessment (Pennington et al., 2018), and available instruments and insights have not been widely adopted in clinical practice. For decisions outside of or adjacent to the medical realm, including those related to housing, finances, and safety matters (guns, sexuality), research is extremely limited. There is a growing literature on assessment of driving capacity, but specialists who can make such assessments are not widely available (see, e.g., Wolfe and Lehockey, 2016; Schultheis et al., 2008).

The tension between autonomy and safety increases as patients’ cognitive decline continues and they become more vulnerable. A significant potential threat to dignity comes with overprotection, yet the risk of abuse and neglect grows when protection is insufficient for an individual whose capacity to make decisions that reflect personal values and interests is compromised by disease. People living with dementia, as with some other illnesses, are negatively affected by stigma, both when others see and treat them disrespectfully and when they incorporate societal bias into their own self-image. This self-stigma can diminish self-esteem and self-efficacy (Watson et al., 2007).

Thus, the need to balance respect for autonomy and beneficence, to promote self-advocacy while offering sufficient support, complicates decision making by and for people living with dementia. Adulthood brings with it the right to make decisions in risky domains, including finance, sexuality and relationships, medical care, driving, gun access, and many others. The committee cannot cover every potentially risky domain in this report, but we review issues related to finance and sexuality for persons living with dementia in order to analyze the nature of the challenges, explore potential solutions, and generate areas for research.⁸ These two domains represent burdens that are both common and serious for people living with dementia and their family caregivers. In addition, we perceive a gap in the research regarding how to promote independence while also providing appropriate protection. Better guidance to help clinicians, people with dementia, and families navigate these complex issues is sorely needed. Finally, we see

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⁸ One key area in which people living with dementia are at risk is the use of physical restraints, which, although it has become less common in institutional settings such as nursing homes, remains an issue with untrained caregivers in the community. See, e.g., https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7058582; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564468 for more on this issue.

in that evidentiary gap the potential for improvement in alleviating the challenges of dementia by developing better interventions, guidelines, and policies.

Financial Decisions and Potential for Abuse

Decisional capacity is a cornerstone of autonomy. Those who can weigh risks and benefits make their own decisions, while those who cannot adequately assess risks have decisions made on their behalf by others. Prematurely limiting the decision-making authority of persons with dementia robs them of their rights and dignity. At the same time, however, protecting someone who has become vulnerable is an ethical responsibility. Two key points regarding decisional capacity are worth noting. First, a diagnosis of dementia does not automatically mean a person has lost the right or ability to make decisions. Dementia is a progressive illness, and people in earlier stages can clearly express and act upon their lifelong values and preferences. Second, capacity is decision-specific, meaning a person may be capable of making some decisions but not others. In many individuals, the capacity to make financial decisions fades earlier than other cognitive skills. People may be able to make values-based medical decisions or select a health care proxy when they can no longer handle complex financial transactions. Yet because of loss of insight, which often occurs in early stages of dementia, they may not be willing to relinquish financial decision making, with substantial consequences. Once it has been determined that a person with dementia cannot make a specific decision, it becomes the responsibility of a surrogate to support the person with dementia in decision making based on the person’s values and previously expressed preferences, if known.

Those whose cognitive impairment undermines their decisional capacity are at increased risk for abuse of various kinds. Older people hold a substantial percentage of financial assets in the United States; net worth for those older than age 65 is roughly 20 times that for those under 35 (Sawhill and Pulliam, 2019). Financial capacity, defined as “the ability to independently manage one’s financial affairs in a manner consistent with personal self-interest,” can be one of the earliest deficits of cognitive function, even before a diagnosis of dementia (Widera et al., 2011). An individual may lose a lifetime’s savings just when those funds are needed for long-term care, precisely because at that time they have become vulnerable to exploitation. In one large sample, 4.7 percent of older people reported suffering financial exploitation. The cost of such abuse in the United States is challenging to measure because much of it appears to go unreported; estimates vary from $3 billion to as much as $30 billion annually (Stanger, 2015; see also Government Accountability Office, 2020).

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⁹ Catherine Christian, Chief of the Elder Abuse Unit of the NYC District Attorney’s Office, personal interview with Tia Powell, October 10, 2018.

family submit an evaluation to a judge, with a request that the person be declared incompetent and that a family member be named guardian, with authority to access all accounts and disburse funds on the person’s behalf. This has traditionally been an all-or-nothing process, in which the person with dementia either retains full decision-making rights or loses them all to a surrogate.

There are many impediments to the smooth functioning of the guardianship process. It is challenging to compel a person to undergo evaluation, and such evaluations can be expensive. The process may be traumatic for the family or disrupt relationships, particularly when dementia has brought impairment of insight or other emotional symptoms. It is not always easy to identify a suitable guardian, and not all guardians discharge their duties as hoped. The criteria for guardianship are generally quite stringent, to protect autonomy, but as one legal scholar and bioethicist has pointed out, the standard guardianship process fails to protect those in the middle, who have neither full capacity nor an utter absence of it (Arias, 2013). In practice, many families “muddle through,” relying on the support they can find from clinicians and financial and legal advisors, and adapting to circumstances. An intermediate step of limited guardianship that offers oversight but permits the person with dementia some participation in financial decision making is one recommended approach (Arias, 2013). This approach aligns well with the ethical obligation to balance freedom and supervision in a fashion that promotes inclusion where possible and permits protection as needed, matching the degree of cognitive impairment with the level of authority of the guardian.

The Consumer Financial Protection Bureau has developed educational materials for banking industry professionals, including tools for identifying unusual banking behavior, such as large money orders sent overseas (Consumer Financial Protection Bureau, 2016). Families often set up joint accounts to oversee a person with dementia’s financial affairs, but such accounts can also make exploitation easy. These accounts allow the family member or other trusted person full access, but the joint holder can use the incapacitated older person’s funds for any purpose, including ones not sanctioned by or in the interest of the person with dementia. Upon the death of one member of a joint account, the funds are owned wholly by the co-holder of the account, which may exclude other family members from an intended inheritance. The move to online banking has enabled some family members to access the account of a person with dementia using that person’s credentials; this practice is convenient but does not protect against unwarranted use of funds. Some experts recommend “convenience accounts,” in which a designated person can use the account to pay bills but will not inherit the funds. Another useful tool is “read only” access in which a third party can monitor banking activity and alert the bank about

suspicious behavior but cannot make withdrawals (Consumer Financial Protection Bureau, 2016).

Sexual Behavior, Risk, and Dementia

Sexual intimacy in the context of dementia is overshadowed by many unhelpful cultural biases, including those involving older people, gender norms, and those with disabilities. Many younger people assume that older people either do not or should not have sexual feelings, and the same incorrect beliefs are often applied to people with disabilities, including cognitive disabilities such as dementia. Moreover, older people with a same-sex orientation may have lived closeted lives, so that even close family members are unaware of their lifelong preferences. The fact is that older people vary markedly in their sexual interests and behaviors, just as other people do, with some remaining sexually active into their 80s and beyond. Aging does not eliminate loneliness or the wish for intimacy, physical touch, and companionship—all reasons why people of any age engage in sexual behaviors. In any case, as with other decisions, a diagnosis of dementia does not in itself prove that someone lacks the capacity to make choices about sexual relationships.

It is also important to note that while most people with dementia live in the community, people with dementia represent more than half of the population of nursing homes. In these institutions, normally private behavior is rarely private.¹⁰ In the past, moreover, nursing homes often prohibited even consensual sexual activity among residents. Standards have evolved in the direction of greater freedom in this regard, although nursing facilities vary significantly in their policies and practices (Ward et al., 2005), and even when facilities have more accepting policies, family members may object and ask staff to prevent relationships among residents. Yet nursing home staff rarely receive training in how to respond to sexual approaches either among residents or to themselves by residents. Sexualized approaches to staff or female residents by male residents, either verbal or physical, are far more likely to be seen as problematic and more likely to result in punitive actions, including rejection from a facility or transfer to a more restrictive section. Women with dementia are more likely to be seen as lacking sexual impulses, and as generally more vulnerable and in need of protection (Ward et al., 2005).

Certainly, sexual behaviors can include risks to both physical safety and dignity for any person, but it is possible, indeed obligatory, to assess risks in individual cases. The presumption should be that sexual behavior among adults, irrespective of a diagnosis of dementia, is a normal and expected expression of self, and that willing and capable participation can

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¹⁰https://www.cdc.gov/nchs/fastats/alzheimers.htm

be assessed. These decisions are of an essentially private nature, and the intervention of others poses a significant threat to dignity and the freedom to act as other adults do. Thus, the starting point for decisions about sexual behavior is that they remain the province of the person with dementia unless there are compelling reasons, not based on bias, to think otherwise. When sexual behavior is unwanted by the person to whom it is directed, such as a staff member at a nursing home, respectful, nonpunitive reactions, such as distraction and redirection, are appropriate. If the person with dementia is viewed as being unwilling or otherwise at risk—for instance, because of a predatory or disinhibited partner—intervention by family members, institutions, or even legal authorities may be appropriate, yet must still be approached in a way that preserves dignity. Dementia also can result in uninhibited sexual self-stimulation, which can be disturbing for staff and other residents, as well as undermine the dignity of the person. Distracting and removing the person to a private setting are the best options; restraints and sedation should be avoided unless strictly necessary. Little research or evidence-based training is available to help address this issue.

Possible and appropriate interventions regarding the sexual behavior of persons with dementia fall on a spectrum. When both participants have full capacity, no intervention is ethically justifiable within this intensely private domain. A next step along the spectrum would resemble the sort of inquiry a concerned friend would make of a person who does not have cognitive impairment but appears to be making an unwise choice. For persons with cognitive impairment associated with dementia, an assessment of their decisional capacity is warranted and is indeed a mark of excellence in nursing homes. As the cognitive deficits of dementia advance, a person may no longer be capable of expressing or acting upon a choice. At this stage, a protective role is ethically justified and comes to the fore.¹¹

Resources for Assessing and Supporting Decisions

Although dementia can undermine a person’s ability to make decisions based on lifelong values, this decline in capacity occurs gradually and affects domains unevenly. As in many aspects of living with dementia, a person may be able to extend autonomy by learning about challenges that dementia is likely to bring as the disease progresses and recording advance directives about medical choices, finances, sexual relationships, and other

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¹¹ An issue that touches on both sexual and financial decision making is marriage undertaken by or with a person who has cognitive impairment. Such a marriage offers the possibility of support in the face of the isolation and loneliness that are common among older people and those living with dementia, but there is also the possibility of exploitation, as well as distress for adult children and other family members. This is another area that has not been well studied.

issues. Such documents as the MOLST (Medical Orders for Life-Sustaining Treatment) are important for directing medical care after a person loses capacity. Unfortunately, no one can realistically predict every challenge or devise an advance directive that will provide adequate guidance for every situation that may arise.

As dementia progresses, a person may still retain a strong sense of self but lose insight or have impaired judgment about risks. Risks associated with driving and gun safety may be misjudged by a person with advancing cognitive impairment. These two activities involve risks not only to the person with dementia but also to others, both in the family and in the local community. The ethical viability of removing a person’s right to make decisions increases as the danger to self and others increases and as the judgment of the person declines.

Clinicians are often asked by family members for help in assessing various types of decisional capacity (including for financial decisions, as discussed above). Yet many physicians lack the appropriate expertise to fill this role, and a comprehensive exam cannot be accomplished during a brief medical appointment. Assessments of capacity also can be quite variable (Stocking et al., 2008). Neuropsychological evaluations can elucidate the impact of impaired cognition on decisions but require considerable time, expense, and expertise (Gurrera et al., 2006). Although most clinicians cannot perform a detailed neuropsychological evaluation—or an assessment of driving skills or financial capacity—they should be able to determine when such evaluations are needed and refer the patient to a professional with the requisite skills. Unfortunately, no single evaluation or type of specialist can assess a person’s capacity to make choices about money, sexual contact, driving, and the wide range of important challenges a person with dementia faces. And as noted, at a given stage of disease, a person may retain the ability to make choices that reflect lifelong values and interests in some domains but not others. This complexity greatly increases the difficulty of finding the right resources to help guide those with dementia and their family caregivers as they navigate potentially risky life choices.

Limited research has been conducted to establish standard tools and methods for assessing different sorts of capacity or to identify ways of making such resources broadly available and easy to administer. The assessment resources available today are not standardized, can be difficult to obtain, and are often expensive and time-consuming. Additional research to develop tools for assessing and supporting decision-making capacity for people living with dementia, aimed at primary care providers, social workers, and others involved in providing care, could help address this gap. Readily accessible educational programs about challenges in decision making for people with dementia and family caregivers, adapted for different cultural groups and languages, might also be helpful.

SOURCE: Reprinted with permission from Springer Nature, Quality of Life Research, Jennings et al. (2016).

A recent National Academies’ report on the challenges of caregiving has also identified a set of principles to guide care and support for people living with dementia (NASEM, 2021, p. 8):

• Person-centeredness: Recognition of persons living with dementia as individuals with their own goals, desires, interests, and abilities.
• Promotion of well-being: The use of social, behavioral, and environmental interventions that holistically address the needs of persons living with dementia, care partners, and caregivers to enhance well-being.
• Respect and dignity: Attention to each person’s particular needs and values, which can be achieved by following models for identifying preferences and values, such as values elicitation, shared decision making, respect for dissent, or seeking either assent or informed consent.
• Justice: Treating people with equal need equally so that, for example, all critically ill persons receive critical care, all expectant

• mothers receive prenatal care, and the dying receive palliative care. By extension, all persons living with dementia, care partners, and caregivers have equal access and can receive care, supports, and services according to their needs.
• Racial/ethnic, sexual, cultural, and linguistic inclusivity: The availability of racially, ethnically, sexually, culturally, and linguistically appropriate services for all who may need them, especially underserved and underrepresented populations, such as racial/ethnic minorities and LGBTQ individuals.
• Accessibility and affordability: Care, services, and supports for persons living with dementia, care partners, and caregivers that do not impose an unmanageable financial burden on individuals or their families and are available and accessible to all who may need them, including those living in rural communities.

The authors acknowledge that more research is needed to provide more explicit guidance regarding dementia care but note that following these guidelines would “represent a significant advance” over care that is currently widely available (p. 8).

Approaches for Addressing Key Dementia Symptoms

Researchers have explored a variety of strategies for improving the experiences of people living with dementia, including forms of cognitive training; therapies incorporating music, animal companionship, and other approaches; exercise; environmental modification; and others. The committee commissioned a paper that provides an overview of this body of work, based on systematic reviews published from 2016 to 2019 (Gaugler et al., 2020). The authors report that while some interventions may have potential, “conclusions as to efficacy or effectiveness are challenging if not impossible due to how control groups are defined, incomplete reporting of protocols and key intervention characteristics, heterogeneous outcome measures, and lack of clarity related to effect sizes or … the clinical relevance of reported effects.” The authors characterize the lack of conclusive evidence for nonpharmacologic interventions as “frustrating.” Described below are some approaches that may hold promise for addressing key dementia symptoms: cognitive decline, functional decline, and behavioral and psychological symptoms.¹²

Addressing cognitive decline

Approaches for addressing cognitive decline include forms of cognitive training, as well as exercise and other lifestyle

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¹² The committee relied on the commissioned paper by Gaugler and colleagues (2020) for the content of this section.

modifications (Gaugler et al., 2020). In general, cognitive interventions, including cognitive training, cognitive rehabilitation, and cognitive stimulation therapy, appear to produce moderate benefits for cognition. Cognitive training includes guided tasks designed to improve memory and thinking. There is evidence that training targeted at specific domains of cognition, such as speed of processing or attention, can bring improvement in that domain. Cognitive rehabilitation is designed to enhance daily living using memory activities and memory-boosting approaches. It has shown limited benefit, particularly compared with other approaches designed to maintain or improve cognition for persons living with dementia. Overall, these approaches appear to have the capacity to strengthen people’s capacity for the task they are practicing, but the benefits do not extend to other cognitive challenges.¹³

The evidence for cognitive stimulation training (CST) is stronger, and it is the only nonpharmacologic therapy recommended by the National Institute for Health and Clinical Excellence in the United Kingdom. Designed to enhance cognitive and social function, CST is often presented in group settings using such approaches as reminiscence and reality orientation (orienting individuals to the day, date, and weather to place them in “reality”). Reality orientation appears to have moderate benefits for cognition (Chiu et al., 2018). Systematic reviews have shown that CST can help improve cognition and memory, usually for persons with less severe dementia (Aguirre et al., 2013; Bahar-Fuchs et al., 2013; Woods et al., 2012). However, researchers have not yet established whether it is effective in community-based settings (as opposed to residential environments). Moreover, the cognitive benefits do not appear to be lasting, and CST does not affect other important domains, such as mood, behavioral symptoms, or daily function.

A fair amount of research supports the idea that physical activity (including both aerobic and nonaerobic exercise) also has the potential to maintain or enhance cognitive function for people with dementia, or possibly delay dementia symptoms (see, e.g., Duan et al., 2018; Farina et al., 2014; Groot et al., 2016; Karssemeijer et al., 2017; Liang et al., 2018; Lim et al., 2019). Although existing research does not provide a clear picture as to which interventions are most consistently efficacious at preventing cognitive decline, emerging work points to the possible benefits of a multicomponent approach that takes advantage of several mechanisms, such as nutrition, exercise, cognitive training, and social activity (Kivipelto et al., 2018).

Addressing functional decline

Decline in such functions as self-care activities is a core symptom of dementia and is directly linked to such adverse

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¹³https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(20)30367-6.pdf

events as falls and greater dependence on help from others. Functional decline that results in dependence is caused in part by neuropathological changes, but contextual factors also play a role. For example, cluttered, loud, or poorly lighted environments; information that is communicated ineffectively; lack of structures to support medication management; and overly complex tasks all may increase challenges for people living with dementia (Gitlin et al., 2020). These contextual factors are modifiable.

The available evidence suggests that several types of interventions are modestly beneficial in ameliorating functional decline. These include occupation-based and cognitive interventions; physical activity that features aerobic exercise, resistance training, or flexibility training or activities that combine all three; modification of the home environment; and family caregiver skills training programs. Approaches that provide education for caregivers and equip them with strategies for managing behavioral challenges, offer physical activity, and modify the home environment show promise (Gaugler et al., 2020).

There is also some evidence that technological assists can be beneficial. Remaining in their homes through the course of their illness is important to many persons with dementia. Such emerging tools as assessment and monitoring technologies, assistive devices, therapeutic devices, and caregiver supportive technologies show promise for supporting these individuals (Moyle, 2019) (see also the discussion of the use of technology to support caregiving in Chapter 5). Currently, many of these technologies (e.g., smart home technologies; artificial intelligence, including the Internet of Things; wearable devices that monitor activities; robotics; medication reminders) are most appropriate for those in the early stages of disease, but some facilitate physical functions, such as feeding and transferring from bed to chair, and may be helpful for those who are in more advanced stages. Some of these technologies are currently available, while others (e.g., self-driving cars) are in development or being tested.

Addressing behavioral and psychological symptoms

Behavioral and psychological symptoms can be very distressing for people living with dementia and their families, and often drive the decision to seek residential care (Gaugler et al., 2009). Interventions to alleviate these symptoms include tailoring activities to the interests of the individual and providing education, skill building, and support to family caregivers (Gaugler et al., 2020) (see also the discussion of approaches for addressing these symptoms in Chapter 4). Emerging evidence points to possible benefits of multidisciplinary care and to the possible reduction of aggressive and agitated behaviors through massage, music therapy, and touch therapy. Cognitive and sensory stimulation, music therapy, animal therapy, and psychotherapeutic approaches (e.g., cognitive-behavioral therapy) show potential for reducing depressive

symptoms and anxiety, as well as enhancing overall quality of life and mood (e.g., Kishita et al., 2020; Hu et al., 2018; Liang et al., 2018; Lorusso and Bosch, 2018; Peluso et al., 2018; Tay et al., 2019; van der Steen et al., 2018; Wood et al., 2017; Yen and Lin, 2018; Zhang et al., 2017; Aguirre et al., 2013; Fukushima et al., 2016; Garcia-Casal et al., 2017). In general, these approaches appear to be more beneficial than pharmacologic treatment in managing behavioral and psychological symptoms and to have fewer negative consequences (Watt et al., 2019).

RESEARCH DIRECTIONS

The committee’s exploration of research intended to improve the experiences of individuals living with dementia points to key gaps in knowledge across the areas discussed in this chapter. Looking first at screening and diagnosis, we identified needs related to disclosure of diagnostic information and predictive measures, as well as the use of biomarkers and their value in clinical practice, including the ramifications, both positive and negative, for asymptomatic persons who could be notified that they have these specific markers of disease. There is a need for psychometric research on the accuracy of screening and diagnostic tools and approaches (e.g., what combinations of historical information about the person’s symptoms, cognitive testing, laboratory tests, and neuroimaging are most accurate), as well as qualitative research on the impact on persons receiving a dementia diagnosis.

We also reviewed research needs related to the support and dignity of people living with dementia. We examined decision making from varied perspectives and identified needs for both qualitative and quantitative research related to the needs of persons at all stages of dementia. Research on how to strengthen protections while respecting autonomy will need to be interdisciplinary, including both ethicists and legal experts along with clinicians and researchers. Research to examine the impact of dementia on decision-making capacity can support the development and testing of interventions with the potential to mitigate such adverse consequences as stigma and improve protection from abuse.

Gaps in the development of nonpharmacologic interventions to slow or prevent cognitive decline, decrease behavioral and psychological symptoms, and increase comfort and well-being for those living with dementia were also evident from our review. Although several interventions (e.g., exercise and cognitive stimulation therapy) have shown promise, few have been studied in adequately powered or pragmatic trials and with diverse groups. Such research is needed to justify broad dissemination.

Finally, we reflected on the nature of the research available in these domains. Much of the research on interventions for people living with dementia is primarily observational or conducted using conventional rather

than pragmatic trials. As discussed in Chapter 2 (see the section on “Interpreting the Evidence”), observational studies provide insight but are not conclusive in determining the effectiveness of interventions. Interpreting observational data is challenging because it can be difficult to disentangle factors that may confound evidence about the factor under study or to identify causation. For example, the effect of physical activity on cognitive decline may depend on when in the life course exercise is initiated, when it is assessed, and the type and amount of exercise involved. Clinical trials are needed to provide more valid answers to such questions. However, conventional clinical trials aimed at demonstrating efficacy may not provide sufficient insight into what is achievable in real-world settings, such as health care systems.

Related is the need for improved measures that can be used in assessing outcomes relevant to persons living with dementia and their family caregivers throughout the course of the disease. Consistent, shared definitions of outcomes of interest and ways to measure them can support efforts to synthesize research from varied domains in this complex area. For example, the goal of supporting people living with dementia in remaining at home through as much of their illness as possible is valued by clinicians, social workers, and families, and a wide array of interventions may contribute to meeting that goal. Use of consistent measures, such as number of days spent at home, across studies would be a valuable aid to harmonizing research, thereby increasing the ability to compare the effectiveness of interventions implemented in different studies. Psychometric research, including qualitative studies to identify meaningful goals for measurement, as well as validation studies, are needed to create instruments that are patient-centered and capture what matters most to those living with dementia and their caregivers over the course of disease. These issues are discussed further in Chapter 8.

The committee identified priority areas for research related to the experiences of individuals living with dementia in two domains: diagnosis and decision-making support, and support for well-being and quality of life. The priority areas for research in each of these domains are summarized in Conclusions 3-1 and 3-2; Tables 3-3 and 3-4, respectively, provide detailed directions for research in each area of these domains.

CONCLUSION 3-1: Research in the following areas related to diagnosis and decision-making support has the potential to substantively improve the experience of individuals living with dementia by supporting their dignity and well-being:

• Improved screening and diagnosis to identify persons living with dementia, including guidance for clinicians that also addresses issues related to disclosure.
• Development of guidance to support ethical and responsible decision making by and for people living with dementia.

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