Mental Health Literacy

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Mental Health LiteracyDiscourses of Dementia.

• Jackie Guendouzi Ph.D
• Southeatern Louisiana University
• Mandy J. Williams Ph.D., CCC-SLP
• University of South Dakota
• Hunter Manasco Ph.D., CCC-SLP
• Misericordia University, PA.

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Mental health literacy

• Public and professional knowledge of dementia.
• Mental health literacy is the knowledge and
  beliefs about mental disorders which aid their
  recognition, management or prevention (Jorm,
  2000, p177)
• Main sources of health information that a
  professional is exposed to,
• their professional training program
• (2) the wider culture and society in which they
  live (including influences such as the
  media).

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Professional cultures

• Result from a combination of historic traditions,
  social demographics and the immediate needs of a
  particular profession (Hall, 2005 Schroeder,
  Morrison, Cavanaugh, West Fache, 1999).
• For example, there are different goals and
  outcomes involved in a doctors diagnosis of a
  persons health condition when compared to the
  goals of a nurse caring for that person on a
  daily basis.

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• It is often assumed that a healthcare
  professional is more likely to be influenced by
  the professional culture in which they are
  trained,
• Also subject to the wider social culture
  surrounding particular diseases.
• e.g. the role of the media in framing public
  perceptions of disease is very influential, and
  in the case of dementia often highly negative.
  (Goffman, 1974 Guendouzi Muller, 2006)

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• A well established public discourse that includes
  the following characteristics (a) loss of self,
  (b) helplessness, and (c) fear.
• Media good news bad news
• Negativity (Galtung Ruge, 1974 Bell, 1991
  Fowler, 19991)
• Sabats (2001) concept of excess disability
• Kitwood (1988) suggested that there are two
  general ways in which dementia is framed in
  western society, the technical and the personal.

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Person-centered approaches

• A personal approach draws on Lurias notions of
  Romantic science (1987b)
• Lurias emphasis was on the individual person
  rather than on disease itself (Kitwood Bredin,
  1992 Kitwood, 1997 Sabat, 2001).
• Sabat points out a person-centered approach
  should include the effects of the behaviors of
  others in people with dementias social life,
  and in the person with dementias reactions,
  both positive and negative, to the behavior of
  others (2001, p.15).

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Questions

• What aspects of dementia did the participants
  feel cause the greatest impairment in dementia?
• 2. What did the participants fear most about
  dementia?
• 3. Did the participants responses express the
  notion that any specific therapies (e.g. speech
  therapy) were more effective than other therapies
  in dementia?

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Participants
Participants- allied health students (n 300),
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Means

• PWMD are disoriented
• PWMD have communication problem
• PWMD are able to live alone
• PWMD have problems with cognition
• PWMD can learn new skills
• PWMD have inappropriate behaviors
• PWMD can interact with others socially
• Physical therapy is beneficial for PWMD
• Speech therapy is beneficial for PWMD
• Occupational therapy is beneficial for PWMD
• Medication is beneficial for PWMD
• Health professionals should attempt interventions
  for PWMD

• 2.40 (0.97)
• 2.73 (1.03)
• 3.28 (1.13)
• 2.15 (1.01)
• 2.60 (1.00)
• 2.63 (1.00)
• 2.35 (0.92)
• 2.93 (1.15)
• 2.15 (0.96)
• 2.24 (1.04)
• 2.38 (0.96)
• 1.75 (0.95)

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Qualitative

• Section two questions
• What aspects of dementia do you feel might cause
  the greatest impairment to a PWMD?
• 2. What would you fear most about developing
  dementia?
• Analyses
• Thematic analysis
• Discourse analysis

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• Disconnection from others
• forgetting the people I love not being able to
  remember my family forgetting loved ones family
  leaving them not knowing anyone around me-scary!
  loosing ability to remember family not
  recognizing love ones family abandonment
• Memory loss
• loss of memory problems with remembering
  forgetfulness
• Dependence/ burden on others
• loss of independence not being able to care for
  self
• Quality of care
• would care be adequate? having someone care for
  me- would it be adequate?

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• Safety/ risks
• safety in home injury safety in home or in
  social life hurting someone or myself leaving
  the stove on and burning down the house
• Affective mood
• feelings of anxiety embarrassing myself fear
  itself they have mood swings
• Stigma
• The perception others would have of me people
  thinking Im crazy people labeling me as crazy
• Loss of cognition
• confusion cognition not knowing who I am/being
  reasoning skills disoriented to the
  surroundings losing cognitive abilities

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• Loss of self
• I will no longer be the person I was losing
  myself becoming a different person personality
  wise
• Paranoia/ crazy
• Paranoia go crazy
• Communication Problems
• loss of social interaction being ignored some
  might think I should live by myself
  communication not being able to effectively
  communicate with loved ones.
• Other
• A spouse or family member might be mistakenly
  shot if this is bad enough not reaching goals
  progressively getting worse

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Thematic Analysis

• Theme Q 1 Q 2
• Disconnection to others 10 91
• Memory loss 88 27
• Dependence/burden on others 25 68
• Quality of care 2 8
• Loss of self 1 20
• Risks/ safety 17 10
• Affective/mood 13 11
• Stigma 1 7
• Cognition problems 78 39
• Paranoia 6 9
• Communication problems 34 19

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Response Pattern

• Question one
• Responses were more reflective of professional
  discourses. Participants used lexical items
  associated with the technical registers learned
  in their programs (e.g. cognition, memory
  loss, paranoia, and inability to carry out
  acts of daily living)
• Question two
• Responses used colloquial lexical items to
  describe similar themes (e.g. getting lost,
  forgetting things, being crazy, and not able
  to care for myself).

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Response patterns

• Lexical items cited in question two also carried
  greater emotional valence (e.g. feeling scared,
  getting to a point where I cant recognize
  family and friends) and are expressions of the
  participants potential reactions to developing
  dementia.
• The students typically used first person
  grammatical constructions to describe their fears
  of dementia (e.g. some might think I should live
  by myself, losing how I am),

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Response patterns

• 1 confusion
• 2. everyone thinking you are crazy.
• memory
• losing who I am
• 1. the inability to remember
• 2. not being able to remember my family and
  friends, they will suffer because I will no
  longer be the person I was
• 1. disorientation
• 2. I would feel scared when I couldnt
  understand where I was

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Negative discourses

• the slow deterioration from being a fully
  functional member of society to having to rely on
  others to meet the daily need in ones life
  (P288-SLP).
• think one of the biggest impairments comes from
  how healthcare providers actually treat people
  with dementia, they often act like nothing can be
  done or get too frustrated to continue treatment
  if they cant see results similar to their other
  patients

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Future directions

• Influences of cultures on Healthcare professionals

Professional culture
Technical approaches Medical model
Personal culture
Interactional space
Social culture
Personal approaches Person-centered
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Suggestions

• (a) wider exposure (through focused discussion)
  to the issue of personhood in dementia
• (b) classes dedicated to examining how
  professional cultures, personal beliefs and
  social discourses interact to impact on the
  management of dementia.