Self-Neglect in Older Adults With Cognitive Impairment

Full Title: Challenges and Management of Self-Neglect in Older Adults With Cognitive Impairment

¹VA Greater Los Angeles Healthcare System, Geriatric Research Education & Clinical Center, Los Angeles, CA ²Department of Medicine, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA

Abstract: Older adults with major neurocognitive impairment (eg, dementia) and poor insight due to executive/frontal deficits often do not understand their lack of ability to safely perform instrumental activities of daily living (IADLs; eg, medication management, finances, driving). This can lead to self-neglect, a problem that is commonly encountered in geriatric practice in patients with cognitive impairment. An interdisciplinary approach is useful in managing these complicated cases. Cognitive and capacity assessment regarding IADL concerns and options for self-care are required, as well as potential involvement of Adult Protective Services and probate conservatorship. The authors discuss common issues encountered in managing these cases and illustrate the process through two case presentations.

Key words: Adult Protective Services, capacity assessments, cognitive impairment, dementia, elder abuse, major neurocognitive impairment, self-neglect in the elderly.
________________________________________________________________________________________________________________________________

Self-neglect in older adults is a pervasive problem with potentially severe and devastating consequences. By some estimates, the prevalence of self-neglect in older adults may be as high as 1.15 million cases in the United States alone.^1,2 According to a nationwide survey of Adult Protective Services (APS) agencies, the majority of elder abuse investigations fall into the category of self-neglect, accounting for approximately 39% of all cases.³ Other categories of elder abuse include exploitation, physical abuse, sexual abuse, emotional/verbal abuse, and caregiver neglect/abandonment. Self-neglect occurs when an older adult is unable or unwilling to effectively meet his or her own needs for food, clothing, shelter, medical care, safety, and personal hygiene, and lacks the insight into the consequences or harm that can subsequently result.⁴ Among community-dwelling older adults, self-neglect has serious implications, including significantly higher risk of other forms of elder abuse,⁵ environmental hazards,⁶ and mortality.^7-9

Cognitive impairment frequently underlies self-neglect due to the reduced ability to carry out daily tasks necessary for independent living.^10,11 However, numerous other factors have been found to increase vulnerability for self-neglect and are often additive to cognitive decline. These include social isolation, depression and/or mental illness, chronic medical problems, sensory loss, reduced mobility (eg, falls risk), frailty, lower socioeconomic status, and older age.^6,10-13 Self-neglecting older adults who display poor judgment and insight and lack decision-making capacity may exhibit other psychiatric and medical conditions that present a challenge for geriatric interdisciplinary care teams. In this article, we offer two case presentations illustrating self-neglect in older adults with cognitive impairment and review the recommended process for identifying and treating this problem.

Case 1

Mr. A was a 78-year-old white man who was referred to our geriatric clinic reporting short-term memory loss. He also reported difficulty with finding the correct words in conversation and felt increasingly frustrated with his memory, causing him to be “short-tempered.” Mr. A’s medical conditions included diabetes, hypertension, and hypothyroidism.

Mr. A had 15 years of education, was living alone in a mobile home, and was receiving informal assistance from his friend for transportation, shopping, housekeeping, and finances. Mr. A also received weekly in-home aide services for his medications (eg, refilling his pillbox) and was receiving food via the Meals on Wheels program; however, he indicated that he sometimes forgot to take his medications (about 2 to 3 days per week) and had not been monitoring his blood glucose levels.

His friend, who was also his primary caregiver and accompanied him on the clinical visit, noted a gradual decline in Mr. A’s short-term memory and daily functioning over the past 2 years. His friend expressed concern about Mr. A’s ability to control his finances, as he had bounced checks that he had written from an expired account. Mr. A said that he no longer drove and that his license had been suspended.

When he arrived at our clinic, a medical examination was notable for elevated blood glucose levels (225 mg/dL; normal, 70-110 mg/dL). Mr. A was using a front-wheeled walker, and his gait was observed to be slow, with a stooped posture. We administered the Montreal Cognitive Assessment (MoCA),¹⁴ on which he scored 20/30, indicating cognitive decline. The results of formal neuropsychological testing revealed impairments in verbal and visual memory, executive functioning abilities, semantic verbal fluency, and processing speed. Performance in language and visuospatial domains remained largely intact.

Mr. A reported feelings of depression, anxiety, hopelessness, and boredom, and remarked that he was experiencing low libido and poor sleep. He attributed his symptoms of depression and anxiety to changes in his functional status and poor short-term memory. He had been prescribed sertraline for these feelings, but he said it was not helpful. He also had a recent history of anger and behavioral issues. Of note, Mr. A made multiple angry phone calls to his primary care physician and other members of the office staff when he felt distressed or upset, and his anger issues escalated to the point where he once pulled the phone off of the wall.

Based on our findings and discussions with Mr. A and his friend, we surmised that Mr. A had dementia not otherwise specified, with the most likely etiology being mixed vascular and frontotemporal dementia. Per the neuropsychological assessment, we recommended to Mr. A’s care team that he refrain from driving and receive 24/7 care, ideally at home, if financially feasible, to help him manage his medications, diabetes, and finances, and to have social stimulation. Caregiver support was recommended for Mr. A’s friend.

Although Mr. A acknowledged his memory issues, he had limited insight into his dementia and, as expected, did not believe he needed 24/7 care. He refused to consider additional help in the home or the option of moving to an assisted living or skilled nursing facility. His refusal to comply with these recommendations compelled the geriatric team to address the issue of Mr. A’s capacity to make decisions regarding his self-care with further assessment. The Health and Safety subtest of the Independent Living Scales (ILS)¹⁵ was administered, and Mr. A’s score was in the low range, suggesting he needed a supervised living situation. During an interview, he was not able to appreciate the risks and benefits of living alone versus receiving 24/7 supervised care. It was deemed that Mr. A did not have the capacity to make decisions about his living situation and care.

The team social worker contacted APS to report their concerns with Mr. A’s self-neglect and safety. It appeared likely that the public guardian would need to be involved in obtaining a probate conservator as Mr. A had no family willing to serve as conservator. His only family member was a sister, who refused to be involved. While waiting for APS and the public guardian to take action, our geriatric team discussed a plan to see if Mr. A’s medical needs could be met with a caregiver in his home for 6 hours per day to provide exercise, companionship, and medication management. Of note, Mr. A was clearly mismanaging his medications at the follow-up appointment, as he was wearing three rivastigmine patches. He also needed a payment service to manage his finances. We established additional services for Mr. A, including home care services. At this time, however, his caregiver friend left for an extended trip. Within 1 week of his friend’s departure, Mr. A was admitted to a locked psychiatric unit of the hospital because he was combative, delusional, and unable to care for himself. He was placed on a 14-day hold for grave disability. Mr. A’s sister is currently working on completing a probate conservatorship for person and estate.

Case 2

Mr. B was an 89-year-old African American man who had been followed for several years in our geriatric clinic due to progressive cognitive decline. Mr. B had a high school education and retired in 1997 due to financial problems with his business. He had several children from two previous marriages, none of whom were in contact with him. Mr. B was also a caregiver for his wife, who had moderate Alzheimer’s disease.

Mr. B’s medical conditions included atrial fibrillation, for which he was not on oral anticoagulation therapy, osteoarthritis, prostatic hypertrophy, type 2 diabetes mellitus, and hypertension. Recent laboratory tests were within normal limits, except for low blood glucose levels (45 mg/dL). During his most recent visit to our clinic, Mr. B’s blood pressure measured 202/134 mm Hg; he stated he had “forgotten” to take his medication that morning; however, on prior visits to our clinic, Mr. B said that he was not taking his blood pressure medication, expressing doubt that the medication helped.

During an interview, Mr. B denied any cognitive or memory difficulties, and he said that he continued to cook, drive, and manage his medications and finances. Two years prior, Mr. B reported mild memory issues, and a diagnosis of cognitive disorder not otherwise specified was made after a neuropsychological evaluation. We repeated neuropsychological testing during his most recent visit, and found that Mr. B’s neurocognitive profile represented a decline over the past 2 years. His score on the MoCA was 14/30, suggesting significant cognitive impairment. His previous scores on the Mini-Mental State Examination (MMSE) were 23/30 (2 years prior) and 30/30 (6 years prior). Specifically, his performance of neuropsychological testing was notable for significant declines in executive functioning and verbal memory, and declines were also noted in attention and concentration, visual memory, and semantic fluency. He met criteria for a diagnosis of vascular dementia per the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Per the ILS,¹⁵ Mr. B’s awareness of health and safety information necessary for independent living was in the low range, suggesting that he would benefit from assistance with IADLs. Mr. B denied problems in his IADL performance, and he disagreed with the geriatric team’s recommendations that he should no longer drive and that he should receive assistance with medication management. Mr. B said that he never drove more than 35 miles per hour as a way to keep safe while driving. Given his diagnosis of dementia, the care team filed a confidential morbidity report with the state health department, which is required by state law in California. Mr. B no longer drove after he was assessed by the department of motor vehicles. Mr. B was also found to lack decision-making capacity regarding his living situation and medical care, as he was not able to appreciate his limitations and the risks and benefits of his current living situation. An APS report was filed for self-neglect for Mr. B and his wife.

APS felt that they did not have “clear and convincing evidence” to pursue probate conservatorship on Mr. B’s behalf, so they gave Mr. B a deadline of 1 month to hire a caregiver and schedule an evaluation with a transportation resource. APS felt that his follow-through would either help to strengthen or weaken the case that probate conservatorship was necessary. Mr. B was not able to follow through on his own, at which time his daughter became involved. APS reported that the daughter became involved with helping Mr. B and his wife with shopping, meal preparation, money management, and transportation. APS decided not to pursue conservatorship for Mr. B because they felt that his daughter was adequately caring him and his wife. Mr. B continues to live at home with his wife and a hired caregiver.

Discussion

In cognitively impaired older adults, self-neglect is a common problem with many assessment and management challenges. Dyer and colleagues¹¹ proposed a conceptual framework for understanding self-neglect as a geriatric syndrome, given new insights into its multifactorial etiology and its association with functional decline.^9,11,16 Dyer and colleagues’ model proposes that this geriatric syndrome occurs because of cognitive impairment secondary to a wide variety of medical etiologies, which subsequently impair the ability to perform activities of daily living. In particular, deficits in executive functioning are likely to promote self-neglect due to lack of insight and poor judgment in managing one’s personal care needs.^11,13 Among a sample of community-dwelling older adults who were found to have self-neglect, Dong and associates⁵ reported that executive dysfunction was an independent risk factor for self-neglect even after controlling for demographic, physical functioning, and psychosocial factors.

In addition to cognitive and functional decline, many elderly persons do not have the social support, finances, or ability to elicit assistance from external sources, which subsequently leads to self-neglect.¹¹ Because social isolation is so pronounced in self-neglect, by the time the individual’s need for intervention is identified, his or her health is likely already compromised. Low social support and inadequate financial resources are often primary components of this syndrome, as individuals of lower socioeconomic status, particularly African Americans, are more prone to the development of self-neglecting behaviors.¹⁷ Thus, the development of self-neglect must be captured within a biopsychosocial framework, particularly emphasizing the role of executive dysfunction and social support. It is important to note that although self-neglect due to cognitive decline is common, cognitive impairment is not a necessary preexisting condition for self-neglect to occur. Self-neglect can be caused by psychiatric and/or physical limitations in older adults with intact cognition, as can occur with low vision, balance impairment, or severe arthritis, for example.

Self-neglect secondary to cognitive impairment poses many challenges to the medical team. The initial difficulty occurs when assessing an older adult who has little or no insight into his or her deficits and therefore reports no problems. To address self-neglect, the healthcare provider needs to feel comfortable assessing the older adult’s capacity for decision-making, and must engage resources to provide a safe living situation. Building and maintaining rapport with these patients is challenging; thus, it is useful to have multiple team members involved in their care. These self-neglect patients can elicit feelings of stress and frustration, and consultation with fellow team members is beneficial.

Continued on next page

Social work plays a critical role in managing these cases successfully, as social workers can connect the older adult with external resources, such as his or her family and support systems. When working with families, it is important to be aware of cultural issues. We have found that it is common for family members to be hesitant to be involved in an authoritative or directing way because of past relationship dynamics and/or cultural dynamics in which the patient is viewed with respect and as the family patriarch or matriarch. Given that the self-neglecting older patient often denies that there is any problem, it can be difficult for children to intervene. Family meetings can help clarify areas of concern and identify resources and ways to intervene; these meetings typically involve the whole geriatric team, such as the physician, social worker, and other relevant team members, depending on the patient’s issues.

Our team has found that when the family is not involved, there may be friends or other support systems that can be used to optimize the older adult’s functioning. These resources may include friends, neighbors, and members of the patient’s church, synagogue, or other religious organization. In a prior case handled by our team, an employee at a local fast food restaurant provided care and assistance to the patient.

The healthcare team can also reach out to APS to perform home visits and advise on probate conservatorship in suspected self-neglect cases. Other team members, such as pharmacists, can assist in medication management (eg, filling medication boxes), and a dietitian can offer recommendations for ensuring patients receive adequate caloric intake and nutritionally manage their diabetes. 

Assessing and Managing Self-Neglect

Based on our experience, we developed a decision tree that can be used to assess self-neglect in older adults with cognitive impairment (Figure). As demonstrated in both of these cases, the initial concern identified in self-neglect is often reduced cognition, suggesting that screening for cognitive impairment should be the first step in these patients’ clinical care. Common brief cognitive screening measures include the MoCA¹⁴, MMSE,¹⁸ Mini-Cog,¹⁹ and St. Louis University Mental Status Examination.²⁰ Our geriatric team has found the MoCA to be most advantageous: it is free and easy to access on the Internet (www.mocatest.org); it has been translated into multiple languages; there is a version that can be administered to the blind; and there are alternative versions that can be used to decrease possible learning effects when the MoCA is given frequently (eg, every 3 months). Unlike the MMSE, the MoCA assesses frontal/executive ability. One caveat to the MoCA is that it is best to use population-based norms,²¹ as it appears that the published cut-off score of 26 is too stringent for lower education and minority groups.

Next, it is critical to assess IADLs (eg, shopping, cooking, managing medications, using the phone, doing housework and laundry, driving or transportation, and finances) not only via self-reports from the older adult, but also through collateral sources, such as family, friends, and caregivers. Of note, permission from the older adult should be obtained prior to contacting other sources for information. Older adults with self-neglect and cognitive impairment often lack insight, failing to appreciate or report that they have limitations in their functional abilities, as demonstrated in both of the cases presented.

Decline in cognitive function leads to rapid loss of decision-making ability and requires care management and close follow-up.²² If self-neglect is secondary to cognitive impairment, capacity assessment is a critical next step.²³ The areas of most common concern regarding capacity tend to be living situation, medical care, finances, and driving. Capacity is decision-specific, and each area of concern must be assessed separately. To assess capacity, the older adult is told the risks and benefits regarding a decision to be made. Then, he or she is asked to restate the risks and benefits, to make a choice, and to explain why he or she has chosen one option over another.

For example, Mr. B was told that his blood pressure was extremely high, and that not taking his medications was placing him at risk for further cognitive decline, stroke, and heart disease. When asked for his opinion, he said that his medications did not work for his high blood pressure, and since it had been high for a long time it would not cause any damage. He also denied any cognitive decline despite severe impairment. Another method to address impaired medical management is to ask the older adult to keep a log of blood pressure or blood glucose readings and bring it back for review.

Finally, if the older adult needs IADL support and does not have a way to access the care he or she needs, reporting the patient to APS is necessary. In more extreme situations, a conservatorship or guardianship must be obtained. If no family members are available to assist, APS has been helpful in working with the public guardian’s office and initiating the necessary legal proceedings.

Conclusion

Self-neglect in older adults with cognitive impairment is a common and challenging problem. Among patients at risk, IADL screening on a regular basis, with self-reports as well as reports from collateral sources, may identify who should receive cognitive assessment. In unclear cases of cognitive decline, neuropsychological assessment may be beneficial. Once self-neglect due to cognitive decline is detected, capacity assessment regarding finances and management of one’s healthcare and living situation is recommended. It is critical to engage the patient’s family or other support systems when available. Reports to APS and probate conservatorship or guardianship may also be necessary. Working as a team is critical as these cases are labor-intensive and require significant follow-up care. 

References

1.     O’Brien JG, Thibault JM, Turner LC, Laird-Fick HS. Self-neglect: an overview. J Elder Abuse Neglect. 2000;11(2):1-19.

2.     Tatara T, Kuzmeskus L. Summaries of the statistical data on elder abuse in domestic settings for FY 95 and FY 96. Washington, DC: National Center on Elder Abuse, 1997.

3.     Teaster PB. A response to the abuse of vulnerable adults: the 2000 survey of Adult Protective Services. Washington, DC: National Center on Elder Abuse, 2003.
https://ncea.acl.gov. Accessed July 2, 2014.

4.     15 questions & answers about elder abuse. Washington, DC: National Center on Elder Abuse, 2005. https://ncea.acl.gov. Accessed July 2, 2014.

5.     Dong X, Simon MA, Evans D. Elder self-neglect is associated with increased risk for elder abuse in a community-dwelling population: findings from the Chicago Health and Aging Project. J Aging Health. 2012;25(1):80-96.

6.     Dong X, Simon MA, Mosqueda L, Evans DA. The prevalence of elder self-neglect in a community-dwelling population: hoarding, hygiene, and environmental hazards.
J Aging Health. 2012;24(3):507-524.

7.     Dong X, Simon MA, Mendes de Leon C, et al. Elder self-neglect and abuse and mortality risk in a community-dwelling population. JAMA. 2009;302(5):517-526.

8.     Lachs MS, Williams CS, O’Brien S, Pillemer KA, Charlson ME. The mortality of elder mistreatment. JAMA. 2008;280(5):428-432.

9.     Naik AD, Burnett J, Pickens-Pace S, Dyer CB. Impairment in instrumental activities of daily living and the geriatric syndrome of self-neglect. Gerontologist. 2008;48(3):388-393.

10.   Abrams RC, Lachs M, McAvay G, Keohane DJ, Bruce ML. Predictors of self-neglect in community-dwelling elders. Am J Psychiatry. 2003;159(10):1724-1730.

11.   Dyer CB, Goodwin JS, Pickens-Pace S, Burnett J, Kelly PA. Self-neglect among the elderly: a model based on more than 500 patients seen by a geriatric medicine team. Am J Public Health. 2007;97(9):1671-1676.

12.   Dong X, Simon M, Fulmer T, Mendes de Leon CF, Rajan B, Evans DA. Physical function decline and the risk of elder self-neglect in a community-dwelling population. Gerontologist. 2010;50(3):316-326.

13.   Dong X, Simon MA, Wilson RS, Mendes de Leon CF, Rajan KB, Evans DA. Decline in cognitive function and risk of elder self-neglect: finding from the Chicago Health and Aging Project. J Am Geriatr Soc. 2010;58(12):2292-2299.

14.   Nasreddine ZS, Phillips NA, Bedirian V, et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc. 2005; 53(4):695-699.

15.   Loeb PA. Independent Living Scales. San Antonio, TX: Pearson, 1996.

16.   Pavlou MP, Lachs MS. Could self-neglect in older adults be a geriatric syndrome? J Am Geriatr Soc. 2006;54(5):831-842.

17.   Mosqueda L, Dong X. Elder abuse and self-neglect: “I don’t care anything about going to the doctor, to be honest…”. JAMA. 2011;306(5):532-540.

18.   Folstein MF, Folstein SE, McHugh PR. “Mini-mental state.” A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189-198.

19.   Borson S, Scanlan J, Brush M, Vitaliano P, Dokmak A. The mini-cog: a cognitive ‘vital signs’ measure for dementia screening in multi-lingual elderly. Int J Geriatr Psychiatry. 2000;15(11):1021-1027.

20.   Tariq SH, Tumosa N, Chibnall JT, Perry MH 3rd, Morley JE. Comparison of the Saint Louis University Mental Status Examination and the Mini-Mental State Examination for detecting dementia and mild neurocognitive disorder—a pilot study. Am J Geriatr Psychiatry. 2006;14(11):900-910.

21.   Rossetti HC, Lacritz LH, Cullum CM, Weiner MF. Normative data for the Montreal Cognitive Assessment (MoCA) in a population-based sample. Neurology. 2011;77(13):1272-1275.

22.   Moye J, Karel MJ, Gurrera RJ, Azar AR. Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med. 2006;21(1):78-83.

23.   Guzman-Clark JRS, Reinhardt AK, Wilkins SS. Decision-making capacity and conservatorship in older adults. Annals of Long-Term Care: Clinical Care and Aging. 2012;20(9):36-39.

Disclosures: The authors report no relevant financial relationships.

Address correspondence to: Stacy Wilkins, PhD, VA Greater Los Angeles Healthcare System GRECC (11G), 11301 Wilshire Blvd, Los Angeles, CA 90073; swilkins@ucla.edu