Self Neglect Research: Implications for Practice

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Self Neglect Research Implications for Practice

• Candace J. Heisler
• Barbara Reilley
• (c) Candace Heisler Barbara Reilley, 2008

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Self Neglect

• Behaviors of an elderly person that threaten the
  elders health or safety
• National Center on Elder Abuse

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Self Neglect

• Not criminal conduct-- no third-party
  perpetrator.
• Teaster, 2003 Teaster et al., 2006
• Reasons for the self-neglect are not easily
  identified
• Only 10 states have statutory definitions of
  self-neglect
• Alaska, Colorado, Louisiana, Maryland, New
  Hampshire, New York, Utah, Washington, D.C.,
  Wisconsin, and Wyoming
• -- National Center on Elder Abuse

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Self-Neglect

• The most prevalent report received and validated
  by APS
• NCEA, 2004
• Independent risk factor for death
• Lachs, 1998

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Can the Self-Neglector Walk the Walk?

• May appear able to conduct life activities,
  manage finances, talk the talk
• Reality is cannot walk the walk
• Write check, manage finances, buy groceries, take
  meds

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Importance of SN Research

• Most frequent APS referral
• Time consuming and expensive to investigate
  intervene
• Difficult to resolve
• Clients often decline services

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Research Questions

• Disagreement about the definition
• Is it elder abuse?
• Does it include lifestyle choices made by persons
  with capacity?
• Does it require that the neglector lack capacity?
• If so, which capacities?
• How best to assess for self neglect?
• What tests to use? Does performance matter?

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Research Questions

• What is the role of nutrition, including
  vitamins?
• How do dementia and depression affect self-care?
• What is the relevance of medical conditions and
  pain?

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Questions Continued.

• What are the best instruments currently available
  to assess for self neglect?
• Are newer, simplified instruments needed?
• How can we gain cooperation and willingness to
  accept services from a self neglector?

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Research Methods

• 200 community dwelling elders
• 100 study subjects
• 100 controls
• Inclusion Criteria
• Substantiated self-neglect by APS
• English speaking
• Community dwellers residing in Harris County, TX
• Agreed to participate
• Completed informed consent (or proxy)

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Demographics N91
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Demographics cont..
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Demographics cont
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Obtaining Consent

• APS case aide identified subjects ask the
  subject or his/her proxy to participate
• If yes, aide notified our research team
• Research team made appt. for house call

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Methodology

• Logistics of doing the study
• House calls
• House call team
• Nurse practitioner, research assistant
• Time for calls
• 1-3 hours

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Battery of 15 Assessments

• Depression
• Dementia
• Cognition
• Executive Function
• Alcohol
• ADL and performance
• Psychiatric Screen
• History Physical with Nutrition Panel
• Social and Medical History

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Tests Administered

• Physical exam/social, medical history
• Medication inventory
• Mini-Mental Status Exam
• Wolf-Klein Clock Drawing
• Manual Muscle Testing
• Activities of Daily Living
• Physical Performance Test
• Kohlman Evaluation of Living Skills

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Tests cont

• Cut-Annoyed-Guilty-Eye (CAGE)
• Alcohol Use Disorders Identification Test
• 15-item Geriatric Depression Scale
• Self-rated Health and Mortality Scale
• Brief Psychiatric Rating Scale
• Self-neglect Severity Scale
• Nutrition panel

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• C.R.E.S.T. Research
• Findings

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Nutrition and Vitamin D

• Elders are vulnerable to Vitamin D deficiency
  (30-90)
• Vitamin D deficiency is associated with falls,
  nursing home placement, decreased physical
  function, strength and cognition

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Vitamin D

• Why?
• Less Vitamin D stored in epidermis of skin
• Limited dietary items (Vitamin D only available
  in small selection of food)
• Decline in kidney function
• Medications

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Vitamin D

• Tests
• Physical Performance Test (0-4)
• Write sentence
• Pick up penny
• Put on/remove jacket
• Place book on shelf
• Transferring food
• Balance (0,2.4)
• Vitamin D levels (blood draw)

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Vitamin D Findings

• Vitamin D is significantly associated with lower
  ADL performance
• Vitamin D deficiency may be related to the
  decline in the ability to function and perform
  basic and instrumental activities of daily living
• Burnett, Smith, Pickens et al 2007

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Other Nutritional findings

• Self-neglectors did not suffer from general
  malnutrition, but were more likely to have
  nutrient deficiencies
• Vitamin D
• Vitamin E
• Folate
• Vitamin A
• Vitamin B-12
• Smith, et al 2006, Journal of Nutrition

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Implications for Research

• Need studies to determine if Vitamin D
  supplementation is a feasible intervention in
  this population
• Need randomized clinical trials to assess the
  effectiveness of vitamin D supplementation on
  health outcomes of self-neglect including the
  delay and restoration of physical function.

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Role of Untreated Medical Conditions Depression
in Self-Neglecting Elders

• Subjects50 self-neglect cases 50 controls,
  matched for age, ethnicity, gender,
  Socio-Economic Status
• 15-Item Geriatric Depression Scale (Lesher
  Berryhill, 1994)
• Depressive symptoms 5
• Sensitivity 91
• Specificity 54

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Untreated Medical Conditions Depression

• 25 (51) of self-neglect group reported at least
  mild depression compared with 14 (28) in non
  self-neglect group
• Most severe depression occurred in clients with
  untreated medical conditions

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Untreated Medical Conditions Depression

• Age did not play a significant role in the
  predicting depressive symptoms
• Important to screen for depression in
  self-neglecting elders

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Untreated Medical Conditions Depression

• Untreated medical conditions were hypertension
  (3) Heart dysrhythmias (2), High potassium (1),
  Low potassium (1), Extreme weight loss (1),
  Cancer (1), Coronary artery disease (1),
  Untreated arthritis (3), Untreated chronic low
  back pain (1), Poor dentition (1)

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Additional Findings Depression

• The GDS was administered to 96 APS substantiated
  cases of elder self-neglect as part of an
  in-home CGA.
• Depressed 49(51)
• Non-depressed 47(49)
• Scores indicating depression as measured by the
  15-item GDS appear to be associated with a prior
  history of alcohol abuse, self-reported pain and
  self-perceived health status in elders who
  self-neglect.

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Future Research - Depression

• What are the potential treatment plans for
  treatment of depression to potentially manage its
  occurrence in self-neglectors?
• Does early recognition and treatment of
  depression reduce risks and improve outcomes for
  self-neglectors?

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Self-Neglect and Pain

• To determine if self-reported pain is associated
  with abnormal scores on the GDS in elders who
  self-neglect compared to matched controls

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Self-Neglect and Pain

• Self-neglect cases reported significantly higher
  levels of pain.
• Cases with pain are significantly more likely to
  screen positive for depression.

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Self-Neglect and Pain

• Stratified by MMSE 19
• Self-neglect cases reported significantly higher
  levels of pain even when cognition was accounted
  for
• Self-neglect cases with pain are significantly
  more likely to screen positive for depression
  when cognition is accounted for

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Self-Neglect Social Networks

• Sound social networks shown to slow decline in
  the elderly
• Little is known about the social networks of
  self-neglectors
• Aim of study was to explore the social networks
  associated with self-neglect compared with a
  matched-control group

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Self-Neglect Social Networks

• 91 self-neglectors 91 controls
• 59 (13) of self-neglectors who were married
  lived with a spouse, as compared with 29 (89) of
  the control group.
• 47 (52) self neglectors lived alone
• 31 (34) control group lived alone

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Self-Neglect Social Networks

• 43 (52) of self-neglect group had no contact
  with neighbors/friends as compared to 19 (22) of
  control group.
• 22 (52) of self-neglect group had weekly visits
  with children as compared to 31 (34) in the
  matched control group.
• 13 (15) of self-neglect group participated in
  religious activities as compared with 27 (33) of
  controls

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Self Neglect Social Networks

• Research suggests diminished social support
  among self-neglectors
• Causation for loss of social network unclear
• Does the SNs compromised living environment
  narrow the support networks? Or
• Is it that as the lack of social support
  increases, the elder loses social competency?

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Self-Neglect Social Networks

• Are SN, as a result of increased rates of
  depression, less likely to engage in
  religious/family/other activities?
• Decreased social networks are significantly
  associated with elder self-neglect are not
  merely tied to Socio Economic Status.
• Burnett, et al 2006,JEAN

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Capacity Assessment

• Overestimating capacity may keep the client in a
  dangerous situation
• Underestimating capacity may limit a persons
  rights

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Capacity

• The abilities to comprehend information relevant
  to treatment decision-making, appreciate the
  significance of the information for ones own
  situation, have a rational process of comparing
  the outcomes of different alternatives, and the
  ability to articulate a single choice.
• Applebaum Grisso, 1988, NEJM

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Challenges for APS and Other Front Line Workers
in Capacity Assessment

• Limited or lack of training or expertise to
  assess for capacity
• Availability of expertise is limited
• No reliable and valid tools for APS workers and
  others on the front lines

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Screening for Capacity

• A positive screening test
• Not definitive evidence that a person has
  significant, irreversible capacity loss
• Guide to when grounds exist to do a more in-depth
  assessment

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The COMP Screen

• Simple assessment tool for screening for
  capacity developed by C.R.E.S.T. researchers.
• Four items
• Count to 20 backwards forwards
• Name 3 objects in the room
• Use three words recall after delay
• Perceptions of diagnosis, risk benefits

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Results COMP Screen

• The COMP is easy to administer in the field
• Can be done quickly (10 minutes)
• All subjects (Self Neglectors control) found
  test easy to take
• The validity of the COMP screen not yet
  established
• More validation studies needed

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Lessons Learned

• Self neglecting behaviors are sometimes caused by
  situations beyond the control of the person
• It is easier to intervene when the Self Neglector
  has resources
• Social networks can be reestablished

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Implications for Practice

• What do you think are the practice implications
  for your discipline?
• Criminal and civil justice?
• APS?
• Health care?
• Policy makers?

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Implications for Practice

• All Disciplines

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Implications for Practice

• IDT response critical for positive outcomes
• Team comes to consensus with everyones input
• All members are equal and have equal right to be
  heard
• Process that may change over time with additional
  information and changed circumstances

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Importance of IDT Response

• May need to help establish or re-establish a
  social network for SN clients
• Break isolation

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Implications for Practice

• Law Enforcement Recruit law enforcement as
  members of team
• Establish fatality review teams work closely
  with medical examiners office on elder cases.
• Involve community and religious leaders not
  traditionally considered as members of the
  healthcare team.

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Implications for Practice

• Need for training of various professionals on
  data
• New tests and assessment, elements of
  comprehensive screen,
• Link between self neglect and executive
  dysfunction
• Relationships between depression and dementia and
  SN
• Nutritional and vitamin findings

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Implications for Practice

• Adult Protective Services

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Implications for Practice

• Are current assessments for self neglect
  effective?
• Review history and origins
• Distinguish typologies
• How assess for executive function?
• Questions
• Performance?

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Implications for Practice

• How do you gain the trust and cooperation of a
  client who is self neglecting?
• Special team of APS?
• Special low caseloads
• Work with allied professionals and team members

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Implications for Practice

• Criminal Justice

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Implications for Practice

• Criminal Justice System
• Law Enforcement, Prosecution, Corrections
• How do we identify self neglectors in our work?
• How do we address criminal situations involving
  self neglectors?
• Who do we work with in self neglect matters?

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Implications for Practice

• Most frequent situations
• Public nuisance
• Code enforcement
• Animal neglect and abuse
• Are subjects criminally responsible?
• 34 not demented (when linked to depression)
• Legally accountable
• How distinguish between those accountable and
  those not?

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Implications for Practice

• How do we assess capacity?
• Does assessment include evaluating executive
  function?
• Who is competent to do the assessment?
• Can a screen be done by field officers?
• Will they need special training?
• Who develop it? How pay for development and
  delivery of training?

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Implications for Practice

• Vitamin and Nutritional data
• Potentially easy to identify and address
• Will addressing nutrition improve ability to
  resolve self neglect conduct?
• Will it reduce vulnerability to future or ongoing
  crime victimization?
• Will it improve memory so a SN client can testify
  as to prior victimization?

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Implications for Practice

• Is self neglect an issue for the defendant
  population?
• Affect ability to comply with terms and
  conditions of sentence/disposition?
• How screen for it? What kinds of cases?
• Handle in problem solving courts?
• What dispositions are most likely to work?

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Implications for Practice

• Civil Justice

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Implications for Practice

• Do current capacity assessments evaluate
  executive function?
• Who is competent to conduct the assessments?
• What professionals need training in the new
  information?

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Implications for Practice

• Do existing legal standards apply this data?
• Incapacity for guardianship
• Need for involuntary intervention
• What are the most effective legal remedies to
  address self neglect
• Is genotype of self neglector important

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Implications for Practice

• Health Care

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Implications for Practice

• Health Care Professionals
• definition of health care workforce must be
  expanded to include everyone involved in a
  patients care health care professionals,
  direct-care workers, informal caregivers and
  patients themselves.
• IOM Report, 2008,Retooling for an Aging America
  Building the Healthcare Workforce.

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Implications for Practice Healthcare

• Enhance the geriatric competence of the entire
  workforce
• Increase the recruitment and retention of
  geriatric specialists and caregivers
• Improve the way care is given
• Requires interdisciplinary, improved open
  communication, improved data collection

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Questions?

• What will YOU do with this information?
• Thank You!
• Candace Heisler
• cjheisler_at_aol.com
• Barbara Reilley
• barbarareilley_at_sbcglobal.net