Self-neglect of the elderly. An overview

Abstract

Self-neglect is characterized by the inability to perform essential self-care tasks threatening a person's health and safety. The exact prevalence of self-neglect in a community-based aged population is not known. Cognitive impairment is the most important predisposing factor of self-neglect. There are also a number of other predisposing factors such as psychiatric diseases, pre-morbid personality, alcohol abuse, poor physical ability, lack of social support and a low socioeconomic situation. Self-neglect has a number of serious consequences. It is an independent risk factor for early mortality among the aged. It commonly causes malnutrition, frailty and the deterioration of physical ability, therefore, increasing the risk of falls and fractures. Untreated medical conditions result in emergency visits and acute hospitalization. The neglect of housekeeping and financial affairs seriously affects the domestic environment. Diagnosis and treatment of self-neglect should be based on the medical and psychosocial assessment of a patient. Patients require multidisciplinary support at home or in hospital, and sometimes long-term care is inevitable. There is no sufficient scientific evidence to support the benefits of early intervention in self-neglect. Controlled studies are needed, especially to show whether early diagnosis followed by increased social support and tailored health care services have an effect on the outcome.

Key words::

• Abuse
• aged
• Alzheimer's disease
• Cognitive impairment
• Dementia
• Depression
• Elderly
• Self-neglect

Key message(s):

• Self-neglect is characterized by the inability to perform essential self care tasks, which threatens a person's health and safety

• Cognitive impairment is the most important predisposing factor for self-neglect among the elderly

• Self-neglect has serious medical and psychosocial consequences and is a risk factor for early mortality among the aged

Introduction

The elderly population is growing throughout the world and there are an increasing number of older people who live alone without a spouse or caregiver, a situation predisposing to ‘self-neglect.’ Ageing also increases the prevalence of cognitive impairment, which is the most important risk factor of ‘self-neglect.’

Self-neglect—also known as ‘senile squalor syndrome’ or ‘Diogenes syndrome’—is considered a form of abuse of the elderly described as behaviour that threatens his/her own health and safety (1–3). It is characterized by the inability of an individual to perform essential self-care tasks such as providing food and clothing, maintaining personal hygiene and household repairs, obtaining necessary services and managing financial affairs (4). This results in injuries, hazards and lack of medical care, which can threaten the safety and independence of an elderly person.

The objective of this overview is to describe and update on self-neglect. In particular, this overview focuses on the predisposing factors and consequences of the syndrome. We want to provide information to help general practitioners identify elderly people who are at risk of self-neglect. Finally, the management and future need to research the syndrome are discussed.

This overview is based on a literature search, performed in the PubMed database using the terms ‘self-neglect,’ ‘squalor syndrome’ or ‘Diogenes syndrome.’ The limits for the search were English language and the age of 65 years or older.

Prevalence and incidence

The exact prevalence of self-neglect in community-based aged populations is not known. This is due to the difficulty in exploring self-neglect in unselected populations. Individuals who neglect themselves do not have contact with social and health care services until they suffer from the severe and often urgent social or medical consequences of self-neglect such as infection, dehydration, malnutrition, hip fracture, sores and delirium.

In a population based cohort of the Chicago Health and Aging Project with 9318 participants aged over 65 years, 16.6% of participants were reported as self-neglecting during the 12-year follow-up (5). The mean age of the self-neglecters was 74 years, and 66% of these were women. In the subset of the same cohort, the prevalence differed between Caucasian and black older adults (5.3% versus 21.7%, respectively) (6). A linkage of an unselected cohort of elderly people in New Haven, Connecticut, with records from Adult Protective Services in order to indentify self-neglect cases, yielded a self-neglect incidence of 5.4% during an 11-year follow-up (7). There are no studies on the prevalence or incidence of self-neglect in European countries.

Predisposing factors

Cognitive impairment is the most important predisposing factor for self-neglect in the elderly population. In an aged cohort, individuals with dementia had a four-fold risk of self-neglect (OR: 4.24; 95% CI: 2.32–9.23) during nine years of follow-up (8). If both dementia and depression were present, the risk was 8.6 times higher than that of non-demented and non-depressed people.

Pre-morbid personality and psychiatric disease predispose to self-neglect (2,8–10). Depression is commonly associated with self-neglect, and may also be a consequence of this syndrome. Depression is often associated with cognitive impairment, and may be an early manifestation of dementia years before the diagnosis (11). Depression more than doubles the risk of self-neglect (OR: 2.38; 95% CI: 1.26–4.48) (8). Depression was found in 51% of older people with self-neglect compared to 28% in those without self-neglect (12). Depressive self-neglecters have more untreated medical conditions than the self-neglecters without depression (56% versus 21%). In addition, other psychiatric disorders, often untreated, are common among the elderly with self-neglect (10).

Alcohol and substance abuse may also result in self-neglecting behaviour with the result of severe concomitant medical problems, malnutrition, poverty and social isolation (13). In the cross-sectional study of Halliday et al., alcohol abuse was present in 27% of self-neglecters (10).

A number of other factors have also been found to be associated with self-neglect. Old age, living alone, low income, hip fracture and a history of stroke predict self-neglect during the follow-up of nine years (8). In addition, male gender was a risk factor when the adjustment with age and many other variables was made. Self-neglect is associated with low physical function, chronic physical illness and impairment in instrumental activities of daily life (5,10,14).

Low levels of social networking and social engagement are related to an increased risk of self-neglect (15). Many older people who neglect themselves live in an isolated environment without appropriate social support or health care services. In the observational study of Burnett et al., 41% of elderly people who had self-neglected themselves lived without a spouse, compared to 11% of matched controls (16). In addition, visits by children, neighbours and friends to self-neglecters were more infrequent. Altogether, 95% of self-neglecters receive only moderate or low social support (17). It is not known, however, whether poor social networking is a cause or consequence of self-neglect. It has also been suggested that self-neglect is attributable to a poor socioeconomic situation and insufficient public support rather than to individual risk factors (18).

Consequences

Self-neglect is an independent risk factor for early mortality among the aged. The one-year mortality after diagnosing self-neglect was six-fold, and the long-term mortality was almost twice as high compared to elderly people who had not self-neglected (5). Self-neglect was associated with increased mortality risk from cardiovascular, pulmonary, neuropsychiatric, endocrine, metabolic and neoplastic diseases. In another prospective cohort with older adults, the nine-year mortality of the self-neglecters was almost twice (OR: 1.7; 95% CI: 1.2–2.5) compared to other members of the cohort (19). Causal pathways and mechanisms of death are unclear.

Self-neglect is associated with poor health and social well being and dependency (15,20). It can lead to low food intake, weight loss, frailty, multiple nutritional deficiencies, vitamin D deficiency, low physical function, osteoporosis, falls and fractures and untreated pain (15,21–23). Emergency visits and acute hospitalization are common (24).

In addition to the medical consequences, self-neglect involves a number of social, ethical and legal problems. Self-neglecters fail to maintain their personal and environmental care and their personal safety is jeopardized due to an unsafe environment and lack of medical care. Inability to take care of financial issues worsens the economic and social situation.

Clinical indicators

It is likely that self-neglect is largely under diagnosed due to the inability and unwillingness of sufferers to seek help. Diagnosing self-neglect is easy on a home visit, but often difficult at a medical appointment or during hospital treatment, particularly if a caregiver is not available. Poor personal hygiene, abnormal behaviour, forgetting appointment times, untreated medical problems, inappropriate use of medication, malnutrition, bruises and bedsores and noncompliance may indicate self-neglect. Hair is unclean and nails are uncut and men may not shave for long periods. Adequate heating, electricity, running water and even toilet facilities may be lacking in the residence. Taxes and bills may not have been paid for months. Concomitant psychiatric disorder, cognitive impairment or alcohol abuse may also raise suspicion of self-neglect. The common indicators of self-neglect are summarized in Table I.

Table I. Common indicators of self-neglect.

Personal hygiene	Dirty, faecal and/or urinary odour
	Uncut and dirty hair, uncut nails
	Insect infestations
	Unclean clothing
Skin	Rashes, bruises, sores
	Infections
Aids	Absence of eyeglasses, hearing aids, dentures, prosthesis and walking aids
Excretion	Urinary incontinence
	Faecal impaction, faecal incontinence
Home environment	Dirty floors and walls
	Presence of urine or faeces
	Devices out of order
	Uncared for pets
	Unsafe home environment
Functional ability	Deficits in IADL and ADL
Cognition	Cognitive impairment
Co-morbidities	Depression, delirium, psychosis
	Malnutrition, dehydration
	Urinary tract infection
Health care and medication	Untreated diseases
	No adequate contact with health carers
	Inappropriate medication
	Refusal to take medication
Socioeconomic situation	No contact with family members or neighbours
	No contact with social carers
	Unable to manage financial affairs

IADL, instrumental activities of daily living; ADL, activities of daily living.

There are no validated and reliable diagnostic criteria for self-neglect. Consortium for Research in Elder Self-neglect of Texas (CREST) has developed the Self-neglect Severity Scale, which was validated in a pilot study (25). The reliability of the scale was adequate, but the sensitivity and specificity remained below conventional acceptable ranges. Pavlou and Lachs have presented the criteria for the screening of potential self-neglect as follows: A self-neglecter is a person who exhibits one or more of the following:

1. Persistent inattention to personal hygiene and/or environment;

2. Repeated refusal of some or even all specific services, which can reasonably be expected to improve the quality of life;

3. Self-endangerment through the manifestation of unsafe behaviours (26).

Any of these findings in primary care could lead to the detailed assessment of health and life situation of the elderly person performed by a general practitioner and home care service.

Implications for practice

Self-neglect includes characteristics typical of geriatric syndromes, such as an association with older age, multifactorial aetiology, co-morbidities, functional decline and increased mortality (27,28). Therefore, it is essential to assess the psychic, cognitive and functional status of the person, need for medical care, medication, the social network and potential caregivers, the home environment and possible hazards at home.

Unfortunately, there are no controlled studies regarding the management of self-neglect. Practical guidelines are based on clinical experience and common principles of good geriatric care. After diagnosis, treatment is planned by the primary care team, including physician, home health care nurse and social worker. Sometimes the need for care may be urgent, and hospitalization is inevitable. In this case, a hospital experienced in geriatric care should be preferred. It is essential to pay attention to appropriate care for memory disorder, dementia, psychiatric disease, malnutrition, sores and other untreated medical conditions. Low physical function may require rehabilitation for a longer period. In some cases, especially in advanced dementia, long-term care may be the only choice soon after an initial assessment.

Implications for research

An important area for future research is to determine to what extent underlying somatic and psychiatric diseases are involved in the development of self-neglect, and in particular, if early intervention can alter this behaviour to improve outcome. The comparison of incidences and features of self-neglect between different countries and cultures may be productive in providing knowledge about family, community and culture as protective factors against self-neglect. An important question is how self-neglect develops. There are no studies indicating what happens during the pre-morbid period. There is no doubt that cognitive impairment has a significant role in the development of self-neglect, and it is also obvious that harmful development begins years before the diagnosis. Since persons with self-neglect do not seek to help themselves, it should also be investigated whether preventive home visits or counselling clinics could stop the progression of self-neglecting behaviour.

Conclusion

There is no sufficient scientific evidence to support the benefits of early intervention in self-neglect. Controlled studies are needed, especially to show whether early diagnosis followed by increased social support and tailored health care services have an effect on the outcome.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.