SELF NEGLECT:
MESSAGES FROM
RESEARCH
Suzy Braye & David Orr, University of Sussex
Michael Preston-Shoot, University of Bedfordshire
Presented by Suzy Braye: 15th May 2014
PAVAUK, Birmingham
Sources of research evidence
Scoping the
concept of
self-neglect
2011
Addressing
workforce
development
needs
2013
Review of
serious case
reviews
Exploring
self-neglect
practice
2013-14
What do we mean by self-neglect?
Lack of standard definition – broad scope
Lack of self- care
• Personal
hygiene
• Daily needs
• Refusal of
essential care
Lack of care for
living environment
• Hoarding
• Squalor
• Infestation
To a degree that endangers own or others’ safety,
health & well being
What causes self-neglect?
• No overarching explanatory model
• May arise from inability or unwillingness, or both
• Influenced by societal and professional constructions of
‘the problem’
Inability
Lifestyle
choice
At best
• Complex interplay of association with physical, mental,
social, personal and environmental factors
• Underlying personality disorder, depression, dementia, obsessive-
•
•
•
•
compulsive disorder, trauma response, severe mental distress,
and/or neuropsychological impairment
Diminishing social networks and/or economic resources
Physical and nutritional deterioration
Once functional behaviours and personal philosophy
Attempt to maintain identity and control
• Some manifestations have stronger recognition as a
disorder (e.g. “hoarding disorder” included in DSM-V
independently of OCD)
The perspectives of people who
self-neglect?
• Little previous research done in this area
• Emerging themes from the scarce literature
• Pride in self sufficiency
• Connectedness to place and possessions
• A drive to preserve continuity of identity and control
• Traumatic life histories and life-changing events
• Shame and efforts to hide ‘evidence’ from others
• Emerging themes from our study:
• Lifelong pattern of behaviour held in balance
• Traumatic event disturbs that balance
• Escalation to the point that someone else gets worried
Service users say …
Neglect of self-care Neglect of environment
Demotivation: homelessness,
health, loss, isolation – selfimage, negative cognitions
Different standards: being
indifferent to social
appearance
Inability to self-care: mental
distress, physical ill-health,
homelessness
Influence of the past:
childhood, loss, abuse,
bereavement
Positive value of hoarding:
emotional comfort, connection
to something, “my family”,
hobby, to be appreciated by
others
Beyond their control: voices,
obsessions, physical ill-health,
lack of space
How can we understand the challenges?
Selfneglect
per se
Mental
capacity
Organisational
& service
environments
1. Challenges from self-neglect per se
The sheer complexity of self-neglect
Understanding what’s
going on
Lack of
training
Uncertainty
about legal
frameworks
Engaging
with the
individual
Adapting
assessment
tools
Knowing
what works
Thresholds
for
intervention
Negotiating
value
positions
Frustration
and anxiety
Competing moral imperatives
Respect for
autonomy and
self determination
Duty of care and
promotion of dignity
• “I’m not 100% convinced our coroner ... will have
heard about the personalisation agenda and
independence, choice and control and I think he will,
without a doubt, see this as a failing of services and
we should have acted. The man had capacity, you
know. He was given all assistance but basically he
said, ‘look, I don’t want you in my house; I don’t
want anything that you could offer me. I’m quite
happy living in the manner in which I want to live,
and go away’ ... I think it’s a real difficult issue.”
2. Mental capacity affects perception of risk
and intervention focus
Mental capacity
Respect
autonomy
to selfmanage
Respect
autonomy
but high
risk
remains
Self-care
Self-neglect
Provide
support to
contain risk
Best
interests
intervention
to reduce
risk
Mental incapacity
Mental capacity
• Capacity in the literature involves not only
• weighing up information and being able to
understand consequences of decisions and
actions, but also
• the ability to implement those actions
• Decisional and executive
capacity
• “Articulate and
demonstrate” models
of assessment
Decisional
capacity
Capacity
Executive
capacity
What about mental capacity in practice:
MCA 2005 guidance
• A person is unable to make a decision if they
cannot:
• understand information about the decision to be
made (‘relevant information’)
• retain that information in their mind
• use or weigh that information as part of the
decision-making process, or
• communicate their decision
Is there room here for executive capacity?
Understanding
relevant
information
This could be seen to include
information about the
consequences of taking or not
taking certain action, and the
likelihood of those
consequences
Using or
weighing
information
“Sometimes people can
understand information but an
impairment or disturbance stops
them using it ... it leads to a
person making a specific
decision without understanding
or using the information they
have been given.”
In practice…
• Decisional capacity is prioritised
• The absence of executive capacity may not be taken into
•
•
•
•
account in determining that an individual has capacity
Understanding the need to act, and deciding to do so, may be
assumed to imply capability to implement the action
Assumption of capacity to make decisions about refusal of
intervention may miss the complexity of ‘relevant information’
or ‘using and weighing information’
Capacity to execute simple functions may mask lack of
capacity to sequence decisions in the more complex ways
necessary to minimise risk
An emerging capacity picture over time may not be pursued.
3. Challenges from organisational &
service environments
Finding an organisational home for selfneglect: “everyone’s, no-one’s, someone
else’s business”
Outside
definition of
vulnerable
adult: SAB
business?
Diverse agency
cultures
thresholds and
practices
Eligibility
barriers to
preventive work
Workflow
patterns based
on time limited
care
management
Care pathways
to
independence
that are not
achievable
Lack of clarity
on information
sharing
No forum for
shared
decisionmaking
Lack of legal
literacy in face
of a complex
legal
framework
Learning from SCRs
Lead
coordinating
manager
Skilled & timely
capacity
assessments
Understanding
of available
legal rules
Multi-agency
approach
Training
informed by
research and
by SCRs
Interface with
safeguarding
Guidance to
staff
Practice and
policy
development
Supervision
that challenges
and supports
Effective interventions? No gold standard
from the literature
Assistance
with routine
daily living
Cleaning as a
short term
solution only
Early
intervention to
prevent
entrenched
patterns
Harm
reduction
strategies
Combined
approaches:
MI, CBT,
sorting, tasks
SRI
medication in
some cases
What’s working in practice?
Negotiated
Sensitive & wide-ranging
assessment
Care by consent: start
with what can be agreed
Support to life transitions
Coerced
Threat to tenancy
Environmental health
Leverage to secure
engagement
Relationship building: piecing together understanding of
the unique experience and working towards trust-based
acceptance of intervention
• “You have to really get to know someone before you know
what self-neglect is about.”
• “People who self-neglect don't want lots of people doing
things for them, but support to get by…we’re mindful that
if we push people to do things they don’t want to do, we
will get nowhere at all because they’ll shut the door.”
• “Respecting lifestyle choice isn’t the problem; it's where
people don't think they’re worth anything different, or they
don’t know what the options are.”
What service users highlight - engaging
with professional help
• Already wondering: spot the moments of motivation,
good timing
• Finding help is difficult: lack of knowledge,
accommodation
• No choice (state of home) but directiveness may be
seen as pushy & unhelpful
• Right kind of input: not intrusive, gender, cost,
encouraging, hands-on, person-centred, going the
extra mile, reliable, compassionate, understanding
What service users highlight – effective
interventions
• Support with clearing if sensitive & participatory; care
•
•
•
•
•
•
•
•
packages that are relevant to perceived needs
Mental health services, such as CBT or counselling,
to tackle deep-rooted issues
Links with other service users
Relationship-building: connection, emotional literacy
Meaningful activity
Carer support
Accessing advocacy and resources, such as benefits
Re-housing
Information
What practitioners highlight
• Can feel lonely, helpless, frustrating and risky
• Strong management support and multi-agency collaboration
•
•
•
•
•
•
crucial
Places and spaces to discuss ethical conundrums, such as
meaning of consent & duty of care – panels, meetings, case
conferences
Time to build relationships – finding the right person & levers to
engage
Work with neighbours and family too
Qualities of persistence, patience, resilience, limited
expectations, respectful curiosity
Good understanding of motivational interviewing, capacity and
law
Little victories, baby steps
Workforce and workplace priorities …
Staff development
and learning,
building
understanding and
capability
Organisational and
interagency,
systems to support
practice, shared
assessment and
decision-making
…to develop:
Organisational culture and practices that give practitioners
the space and time for building relationships of trust
Flexibility in what are expected as case outcomes
Training and practice development mechanisms to
facilitate key aspects of effective practice
Interagency systems for shared assessment, intervention,
risk-management and decision-making
Further information on the research
• Braye, S., Orr, D. And Preston-Shoot, M. (2011) Self-Neglect and
Adult Safeguarding: Findings from Research. London: SCIE.
http://www.scie.org.uk/publications/reports/report46.pdf
• Braye, S., Orr, D. and Preston-Shoot, M. (2011) ‘Conceptualising
and responding to self-neglect: challenges for adult
safeguarding’, Journal of Adult Protection, 13, 4, 182-193.
• Short presentation on the 2011 research findings
http://www.communities.idea.gov.uk/comm/landing-home.do?id=2962596
• Braye, S., Orr, D. And Preston-Shoot, M. (2013) A Scoping Study
of Workforce Development for Self-Neglect. London: Skills for
Care. http://www.skillsforcare.org.uk/NMDS-SC-intelligence-research-andinnovation/Research/Research-reports/Workforce-development-for-selfneglect.aspx
Professor Suzy Braye, s.braye@sussex.ac.uk; Dr David Orr,
d.orr@sussex.ac.uk; Professor Michael Preston-Shoot,
michael.preston-shoot@beds.ac.uk