Most older Americans with advancing dementia remain in their own homes

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Contrary to popular belief, most older Americans with advancing dementia remain in their own homes – many until they die.

But a new study by researchers at UC San Francisco has revealed that this population may endure more pain and have more complex or unaddressed medical needs than their counterparts in nursing homes.

In the study, researchers compared the medical characteristics of 728 adults over 65 with moderately severe dementia, in three settings: the participants’ own homes; residential care, which spans the spectrum of retirement communities from those offering support at extra cost to assisted-living facilities; and nursing homes, which care for people unable to attend to their most basic needs.

Although the living-at-home participants had an average age of 82, four years younger than the nursing home residents, the researchers found that they had more chronic conditions – 3.2 versus 3.1 – were more likely to be bothered by pain – 70.8 percent versus 58.6 percent – and had fallen in the last month or had concerns about falls – 67.1 percent versus 50.4 percent.

Additionally, they were more likely to have anxiety and fair or poor health, rather than good or excellent health.

Seniors Turning Away from Nursing Facilities in Favor of Familiarity of Home

But the authors say the findings – which appear in the Journal of the American Geriatrics Society on Aug. 7, 2019 – should not be interpreted as a call to accelerate moving people with moderately severe dementia from their homes.

“Rates of nursing home use are declining because they are expensive and people generally prefer the familiarity of home,” said first author Krista Harrison, Ph.D., of the UCSF Division of Geriatrics.

“People with dementia benefit from consistent and predictable environments and caregivers. Nursing homes may offer more people to help with medical and social needs, but that might mean sharing a room with someone with different daily habits or distressing behavior symptoms.”

In keeping with the trend away from nursing homes, Medicaid spending on community and home-based services has surpassed spending on institutional care, the authors noted.

The participants were drawn from a sample of Medicare enrollees, representative of seniors nationwide. Some 499 of the total participants lived at home (68.5 percent), 126 lived in residential facilities (17.3 percent) and 103 (14.2 percent) lived in nursing homes.

In a 2015 study cited by the authors and drawn from a separate nationally representative sample of U.S. seniors, 58.7 percent with dementia were reported to have died in their homes.

To meet the criteria for moderately severe dementia, the study’s participants had a doctor’s diagnosis for dementia or were determined to have probable dementia according to a survey algorithm.

Additionally, they had to struggle with at least one activity of daily living, such as dressing, bathing or toileting, and a “cognitively-oriented instrumental activity of daily living,” such as managing medications or finances.

“At this stage of dementia, patients may have difficulty recalling their address or personal history,” said senior author Alexander K. Smith, MD, MPH, from the UCSF Division of Geriatrics and the San Francisco Veterans Affairs Medical Center.

“Communication becomes impaired and the individual may struggle to follow a conversation and become disoriented with respect to time and place.

They may lack good judgment and experience mood and behavior changes.”

Seniors in residential facilities with moderately severe dementia differed from those at home and in nursing homes.

This group, whose average age was 85, had less depression and anxiety, fewer chronic conditions and less unintentional weight loss. However, the cost of residential care facilities, which average $48,000 a year, makes them prohibitive to most seniors for multi-year stays.

While nursing homes are more expensive, depending on the state, Medicaid may cover seniors with particularly low income and assets, the authors said.

Seniors in Residential Care More Likely to Be Higher Income, Less Likely to Be Partnered

Not surprisingly, the seniors living in residential care had higher incomes and were more likely to be U.S.-born and have post-high-school education, compared to those living at home or in nursing facilities.

Conversely, this group was significantly less likely to be married or living together (16.4 percent) compared to those living at home (45.1 percent) or in nursing facilities (21.8 percent).

Home-based medical care, in which insurance pays for coordinated home care provided by doctors, physician assistants or nurse practitioners and their interdisciplinary teams, is a small but growing portion of health care.

“Some people with dementia who live at home receive home-based primary, geriatric or palliative care, but many more likely do not,” said Harrison, who is also affiliated with the UCSF Philip R. Lee Institute for Health Policy Studies.

“There is an urgent need for these services—as well as home health aides and other social supports—to become widely available to those families providing home care for loved ones with dementia.”

Studies indicate that just 12 percent of homebound people receive primary care in their homes, according to the authors. Such programs result in reductions in disability and depression, fewer visits to emergency departments, fewer hospital stays and long-term care admissions, as well as positive impacts on caregivers’ health.


Demographic and societal changes over the past three decades are bringing greater attention to where older adults live, as well as the informal and formal supports available to them.

An overwhelming majority of older adults would like to age in place, defined as “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level” (Centers for Disease Control and Prevention, 2013).

Furthermore, an increasing number are able to do so; in the United States, for example, the proportion of those 85 and older living in long-term care institutions has declined from about 26% in the 1970s to 14% in the 2000s (Hayutin, 2012).

Although decreased fertility, fewer women staying at home, and the geographic dispersion of families have reduced the availability of families to help older loved ones with their daily activities (Spillman & Pezzin, 2000), an expansive continuum of home and community based services and other supports are available to help people of all ages to live as independently as possible in the community.

Both formal and informal community-based supports, however, may be ill-equipped to provide the needed assistance to some older adults who are more vulnerable to housing concerns due to physical and cognitive challenges.

Older adults with dementia, which is currently conceptualized and labeled “neurocognitive disorder” (Sibersky, 2012), have a particularly high need for informal and formal support and are at an increased risk for institutionalization (Banaszak-Holl et al., 2004).

Over 44 million people worldwide are currently living with a neurocognitive disorder, and this number will more than triple to above 135 million by 2050 (Alzheimer’s Disease International, 2013).

A projected rate of about 1,000,000 new cases of Alzheimer’s disease (AD) diagnoses per year by 2050 translates to one new case diagnosed every 33 seconds (Alzheimer’s Association, 2014).

This suggests that a growing number of older adults with a neurocognitive disorder will need to assess, often with assistance or direction from their friends and family, whether aging in place or relocation will best meet their care preferences and needs.

Frameworks from the field of environmental gerontology have informed much of the scholarly work on aging in place and relocation.

One particularly promising framework is Wiseman’s (1980) Behavioral Model of Elderly Migration, which explicates the process of residential relocation in later life, viewing it as an interaction between triggering mechanisms and personal resources. I

t remains unclear, however, the extent to which this conceptual work informs services and supports for older adults, and to our knowledge the Wiseman model has not been applied to people with neurocognitive disorders.

To address this gap, this article has two specific aims:

1) propose ways in which Wiseman’s model can inform interventions for older adults with a neurocognitive disorder, and

2) suggest additional considerations of the needs of older adults with a neurocognitive disorder to inform further development and empirical testing of this model. To address these aims, we developed three case vignettes that draw from our social work professional experiences.

Understanding Wiseman’s model, including the additional considerations potentially needed when working with older adults diagnosed with a neurocognitive disorder, can help future practitioners ensure that their older patients and clients live in settings that best meet their care preferences and needs and inform future empirical studies on this topic.

Neurocognitive Disorder

Neurocognitive disorder is an acquired and persistent clinical syndrome caused by brain damage or disease. It involves multiple cognitive impairments that lead to dysfunction and disability (Qui, de Ronchi, & Fratiglioni, 2007), loss of independence with activities of daily living (Neundorfer et al., 2001), depressive symptoms (Stroud, Steiner, & Iwuagwu, 2008), and premature institutionalization and death (McClendon, Smythe, & Neundorfer, 2006).

General categories of symptoms of neurocognitive disorder include difficulty remembering (amnesia), difficulty performing routine activities (apraxia), difficulty perceiving the environment (agnosia), and difficulty communicating (aphasia).

As a result of these cognitive impairments, people with a neurocognitive disorder also experience significant functional impairment, unpredictable personality changes, psychiatric features like hallucinations and delusions, and emotional irregularities like depression and anxiety (Zarit & Zarit, 2007).

In total, more than 60 different diseases and conditions can cause neurocognitive disorder (American Psychiatric Association, 2013), with each having a distinct profile of pathology and resulting symptoms.

Alzheimer’s disease is the most common cause of dementia, with AD alone accounting for 50% to 70% of dementia cases and combinations of AD and other brain diseases responsible for up to 90% of cases (Weiner & Lipton, 2012).

The progressive impact of the vast majority of neurocognitive disorders is increasingly devastating, as are the effects on family members and friends, especially those involved in care (Toseland & Parker, 2006).

Researchers and practitioners have long recognized that social and physical environments are key factors in the quality of life of older adults with a neurocognitive disorder, and influence where these elders live.

The social environment has typically been examined in terms of the informal support system, and approximately 70% of all the care for people with dementia is provided in private homes by family and friends (Alzheimer’s Study Group, 2008).

As a neurocognitive disorder advances it is important to assure that the family care team is well educated and prepared for the cognitive and behavioral issues that may arise.

A difficult aspect of care provision for individuals with a neurocognitive disorder is the increasing need for direct engagement and supervision.

Medicare and other forms of insurance do not routinely reimburse for companion care that would help to support optimal adaptation to gradual losses of independence, so much of the responsibility for this type of care falls on the informal support system including spouses, siblings, and adult children.

There are evidenced-based interventions that address caregiver needs (e.g. psychoeducational–skill building interventions and cognitive-behavioral therapies), and research has shown that psychosocial interventions can improve outcomes such as improved caregiver knowledge, coping skills and social support; improved patient skills, cognition, activities of daily living, and mood; and reduced patient depression and agitation (Brodaty, Green, & Koschera, 2003; Gallagher-Thompson, & Coon, 2007O’Connor, Ames, Gardner & King, 2009a2009bOlazaran et.al., 2010).

Though receiving less attention than the role of caregivers, a burgeoning literature also recognizes the influence of the physical environment on safety and health outcomes for those with a neurocognitive disorder, including the impact of wandering behaviors, cooking hazards, medication mismanagement, access to firearms, and improper space design (Horvath et al., 2013Horvath, Harvey, & Trudeau, 2007Lach, Reed, Smith, & Carr, 1995Van Hoof, Blom, Post, & Bastein, 2013).

Numerous complications threaten the safety and appropriateness of remaining in the home as symptoms worsen and stresses mount. For example, both social scientists (e.g., Lawton, 2001) and architecture and planning experts (e.g., Calkins, 1988) have written about designing residential environments for persons with dementia, frequently focusing on an institutional setting.

Home environments have also received attention; for example, the typical home is rife with environmental hazards, such as loose stair rails and bathrooms lacking grab bars, which should be proactively addressed to avoid accident and injury (Rowe, & Fehrenbach, 2004Horvath et al., 2013).

Many people with a neurocognitive disorder and their family caregivers, however, lack awareness of these risks, the strategies to mitigate the risks, and the resources available to learn about these issues.

One promising intervention that targets both the social and the physical environment involves occupational therapists providing intensive in-home training to enhance caregiver’s abilities to manage neurocognitive symptoms (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001).

In this intervention, caregivers learn about environmental effects on their care recipient’s behavior, identify hazards in the home (such as throw rugs or shaky stair railings), and devise strategies to enlist help from informal and formal sources of care.

Randomized control trials indicate that caregivers participating in this program experience a reduction in emotional distress and an increase in self-efficacy, while their care recipients have fewer behavioral problems and slower declines in instrumental activities of daily living (Gitlin et al., 2001).

Thus, meaningful benefits related to home safety and caregiver abilities can be realized through existing interventions and adaptations in the home setting.

Because a large number of people with neurocognitive disorders live in the community and prefer to receive care in the home, it is critical to understand both the individual and environmental implications of the disorder in order to effectively design appropriate assessment and intervention protocols, and determine the optimal living setting.

Given the complexity of diagnosis and prognosis with neurocognitive disorders, including bio-psycho-social factors, sophisticated multidimensional evaluations conducted by expert providers are typically required to assure home-based safety, care, and quality of life.

We propose that incorporating ideas from environmental gerontology can enhance the acceptability, effectiveness and person-centeredness of such evaluations and interventions. This includes, for example, knowledge of residential safety enhancements (e.g., monitors and grab bars) and knowledge of the built environment (e.g., the particular benefits of community-based services such as adult day care centers, home care services, and respite programs to assist working caregivers).


More information: Krista L. Harrison et al, Care Settings and Clinical Characteristics of Older Adults with Moderately Severe Dementia, Journal of the American Geriatrics Society (2019). dx.doi.org/10.1111/jgs.16054

Journal information: Journal of the American Geriatrics Society
Provided by University of California, San Francisco

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