All long-term care (LTC) communities provide care for older adults who can no longer safely live at home, but the level of care may differ. In general, residential care communities, also known as group homes, offer a lower level of care than assisted living (AL) communities, which in turn provide a lower level of care than skilled nursing facilities (SNFs).1,2 In the LTC community, the concept of aging in place, or avoiding being moved from a current level of care to a higher level of care, is an important goal for managing patients. While some patients can age in place at their home or in a group home, others undergo various transitions of care because of their care needs.1,2 Many AL community residents transition into an AL community from their own home, but others arrive from other LTC communities.1 AL community residents commonly transition to the hospital setting and back again, and most AL community residents will eventually transition to an SNF.1 Some people may choose to live in a continuing care retirement community (CCRC), which is a single community that offers independent housing, assisted living, and skilled nursing care all on one campus.2 CCRCs allow patients with dementia to move between levels of care based on their individual needs.2
Some LTC communities may have dedicated memory care units (MCUs) that provide specialized care for patients with dementia. MCUs take many forms and may exist within various types of residential care. MCUs may be locked or secure units and may exist as a floor or unit within a larger LTC community.3
Role of Neuropsychiatric Symptoms (NPS) in Transitions to LTC – Many factors drive transitions to a different level of care in patients with dementia, including the presence of NPS. NPS are a range of symptoms seen in dementia patients and include delusions, hallucinations, agitation/aggression, dysphoria, anxiety, euphoria, apathy, disinhibition, irritability, and aberrant motor behavior. The frequency and severity of NPS can be measured using the Neuropsychiatric Inventory (NPI).4
The relationship between NPS and institutionalization was demonstrated in a case-control study of patients with AD and their caregivers. Analysis of the study data revealed that a 10% increase in NPI total score was associated with a 30% increase in the odds of nursing home placement (Figure 1). The NPI subdomains of agitation/aggression, appetite, delusions, disinhibition, irritability, and sleep were significantly associated with increased odds of nursing home placement. Hallucinations, however, were not significantly associated with increased odds of nursing home placement in this study.5
A separate study assessed the relationship between NPS and institutionalization. Univariate Cox regression analyses showed that dementia-related hallucinations and delusions, depression, and physical aggression are predictors of decreased time to institutionalization in patients with AD dementia (Figure 2). This analysis also showed an association between urinary incontinence and decreased time to institutionalization.6
The Relationship Between Caregiver Burden, NPS, and Institutionalization – Caregiver burden is another factor influencing the institutionalization of patients with dementia. A study of 355 informal caregivers of patients with dementia was conducted in Belgium to assess factors influencing their desire to institutionalize (DTI).7 A multivariable regression model was used to evaluate several caregiver and patient characteristics, which included caregiver age, patient age, cohabitation, caregiver professional situation, change in caregiver professional situation, caregiver education level, patient outpatient visits in the last month, emergency room consult in the last 6 months, respite care use in the last 6 months, self-perceived burden, and impact of disruptive behaviors on caregiver. The factors positively associated with DTI were higher burden, being affected by behavioral problems, respite care use, older caregiver age, being professionally active, and higher caregiver education level. Of all these factors, caregiver burden was the most important influencer of DTI based on the Wald estimate in the multivariable model used in the study (𝑥2=20.1, p<0.001) (Figure 3).7
To determine the potential causes of caregiver burden, data from Clinical Antipsychotic Trials of Intervention Effectiveness in Alzheimer’s Disease (CATIE-AD) were used to examine the relationship between caregiver burden, depression, and distress with NPS in 421 ambulatory AD patients with hallucinations and delusions or agitation. This study revealed that NPI score correlated with caregiver burden, depression, and distress (Figure 4).8 Thus, the interplay between NPS, caregiver burden, and institutionalization may affect a patient’s ability to age in place.5-8
Professional Caregivers in LTC Settings Perceive Residents’ Behavior as Challenging – NPS may have behavioral manifestations that include but are not limited to verbal aggression, physical aggression, and excessive motor activity such as rocking or pacing.9 This may be relevant in the LTC setting, as a study of 61 professional caregivers working in continuing care homes for older people with dementia found that all caregivers perceive residents’ behavior as challenging and that a large majority of caregivers rate residents’ behavior as very or extremely challenging (Figure 5).10
Hallucinations and Delusions May Be Associated With Physical Aggression – A study comparing nursing home residents who had been reported to have had an episode of aggression in the week before assessment with residents with dementia who had not been aggressive showed associations between hallucinations, delusions, depression, and constipation with episodes of physical aggression (Figure 6). Decreased participation in recreational therapy, respiratory or urinary tract infections, fever, and pain were assessed but found not to be associated with aggression.11 However, it is important to understand that problematic behaviors in patients with dementia can result from multiple other factors, including medication side effects, untreated medical conditions, and environmental and caregiver considerations.12 Accordingly, there is a consensus among experts and professional associations specializing in dementia care that management of NPS requires a careful evaluation of contributing factors and potential underlying causes before a specific treatment approach is considered.12-14
Behavioral disturbances may be the only overt manifestations of an acute medical problem in LTC residents, and early detection of the underlying causes of behavioral disturbances may prevent escalations in a patient’s level of care.15,16 Documentation of the clinical features, frequency, and triggers of a patient’s behavior may be helpful as medical staff investigate whether a specific treatment approach is appropriate. Documentation of a patient’s behavior should include the location of the behavioral incident, when the incident occurred, the specific nature of the behavior (eg, pacing, screaming, hitting), any associated triggers or events (eg, feeding, bathing), the immediate response of the staff member who witnessed the behavior, and whether their response was effective.17
Asking “Why now?” may be useful when evaluating contributing factors to a behavioral incident. Temporally associated factors may be good candidates to consider while ruling out potential contributing causes, and careful documentation of this process may help to determine underlying issues. In patients with advanced dementia, the individual’s inability to communicate verbally may complicate this process. Careful observation of these patients can yield valuable information. Those who spend the most time with the patient, such as family members or a nurse’s aid, can be a good source of such information as well. According to expert consensus, direct treatment of the behavioral issue itself is only appropriate when all basic needs are met and contributing causes are addressed.9,12-14,17
- National Center for Assisted Living. Accessed June 2020. https://www.ahcancal.org/ncal/facts/Documents/09%202009
- National Institute on Aging. Accessed June 2020. https://www.nia.nih.gov/health/residential-facilities-assisted-living-and-nursing-homes
- Alzheimer’s Association. Accessed June 2020. https://www.alz.org/help-support/caregiving/care-options/residential-care
- Cummings JL, et al. Neurology. 1994;44(12):2308-2314.
- Porter CN, et al. SAGE Open Med. 2016;4:2050312116661877.
- Gilley DW, et al. Psychological Med. 2004;34(6):1129-1135.
- Vandepitte LE, et al. Dementia Geriatr Cognitive Disord. 2018;46:298-309.
- Mohamed S, et al. Am J Geriatr Psychiatry. 2010;18(10):917-927.
- Cummings J, et al. Int Psychogeriatr. 2015;27(1):7-17.
- Duffy B, et al. Dementia. 2009;8(4):515-541.
- Leonard R, et al. Arch Intern Med. 2006;166(12):1295-1300.
- Kales HC, et al. J Am Geriatr Soc. 2014;62(4):762-769.
- American Geriatrics Society. Accessed June 2020. https://qioprogram.org/sites/default/files/AGS_Guidelines_for_Telligen.pdf
- Lyketsos CG, et al. Am J Geriatr Psychiatry. 2006;14(7):561-572.
- Desai AK, et al. Primary Care Companion J Clin Psychiatry. 2001;3(3):93-109.
- Boockvar K, et al. J Am Geriatr Soc. 2000;48(9):1086-1091.
- Occupational Health and Safety Agency for Healthcare in BC. Accessed April 2020. http://www.phsa.ca/documents/occupational-health-safety/toolkitohsahbehaviourdocumentationtoolkit.pdf