Signs of Deterioration Indicators of deterioration Clusters of signs of deterioration Reported change A person, or someone who knows the person well, reports that her or his mental state is changing for the worse. Self-initiated requests for assistance Requests for treatment from healthcare professionals or those close to the person Self-reported negative or inflated of self Self-reported uncontrollable thought processes Self-reported negative emotions Distress A person, or someone involved in her or his care, shows signs of distress, which are evident through observation and conversation. Uncharacteristic facial expressions Physiological/medical deterioration Negative themes in conversations Apparent distress of self or others Loss of touch with reality or consequence of behaviours A person is losing touch with reality or the consequences of her or his behaviour. Indications of experiencing delusions Indications of experiencing hallucinations Unusual self-presentation Unusual ways of behaving Appearing confused during conversations Loss of function A person is losing her or his ability to think clearly, communicate, or engage in regular activities. Unusual movement patterns Loss of skills Poor daily self-care Reduction in regular activities Difficulty participating in conversations Unusual speech during conversations Seemingly impaired memory Apparent difficulty with thinking things in different ways Elevated risk to self, others or property A person's actions indicate an increased risk to self, others, or property. Increases in the use of restrictive practices Reduced safety of self Reduced safety of others Reduced safety of property Disengaging from treatment Unresponsiveness to treatment
5: Initial assignment of the clusters of signs to the indicators. Reported Change Distress Loss of with Reality or Consequence of Behaviours Loss of Function Elevated Risk to Self, Others or Property Self-initiated care-seeking behaviours Care-seeking initiated by carers and others Self-reported sadness Self-reported fear Self-reported anger Self-reported sense of self Self-reported uncontrollable thought processes Pessimistic talk during conversations Appearing challenging during conversations Facial expressions Social circumstances and environment Unusual self-presentation Unusual ways of behaving High energy behaviours Expressing strong beliefs that are contradicted by reality or rational argument Appearing to hear or see things that are not real Unusual movement patterns Loss of skills Poor daily self-care Reduction in regular activities Low energy behaviours Appearing disconnected during conversations Appearing distracted during conversation Speech during conversations Difficulty following conversations Appearing confused during conversations Seemingly impaired memory Apparently inflexible thought processes Withdrawing from social situations Disengaging from care Increases in the use of restrictive practices Unresponsiveness to care Constantly changing symptoms of a mental health condition Physiological/medical Reduced self-restraint Reduced safety of self Reduced safety of others Reduced safety of property
Table 9: Proposed clusters of signs and indicators of deterioration in a person's mental state. Reported Change Distress Loss of with Reality or Consequence of Behaviours Loss of Function Elevated Risk to Self, Others or Property Descriptions A person, or someone who knows the person well, reports that her or his mental state is changing for the worse. A person, or someone involved in her or his care, shows signs of distress, which are evident through observation and conversation. A person is losing touch with reality or the consequences of her or his behaviour. A person is losing her or his ability to think clearly, communicate, or engage in regular activities. A person's actions indicate an increased risk to self, others, or property. Clusters of Signs Self-initiated requests for Requests for treatment from healthcare professionals or those close to the Self-reported negative or inflated sense of Self-reported uncontrollable thought processes Self-reported negative Uncharacteristic facial Physiological/medical Negative themes in Apparent distress of self or others Indications of experiencing Indications of experiencing Unusual self-presentation Unusual ways of Appearing confused during conversations Unusual movement patterns Loss of skills Poor daily self-care Reduction in regular Difficulty participating in b Unusual speech during Seemingly impaired memory Apparent difficulty with thinking about things in different Increases in the use of restrictive practices Reduced safety of self Reduced safety of others Reduced safety of property Disengaging from Unresponsiveness to Note: Changes to clusters are provided in superscripts (refer to Appendix B for details). name of the cluster has been modified. cluster has been combined with other clusters.
2. Unusual ways of behaving. Examples: shopping without paying, overspending, being over-generous, asking inappropriate questions, inability to self-regulate, unusual rituals, unusual requests, erratic behaviour, disorientated behaviour, bizarre behaviour • Could be combined with low energy behaviours (Cluster #15), high energy behaviours (#16), and reduced (#17). • Shopping without paying seems too vague (Did they forget or was it intentional?); perhaps it can be contextualised. • Cluster changed to incorporate low energy behaviours (Cluster #15), high energy behaviours (#16), reduced (#17), and constantly changing symptoms of a mental health condition (see feedback on #11). • Shopping without paying removed. 2. Unusual ways of behaving. Examples: overspending, over-generous, asking inappropriate questions, unusual requests, inability to self-regulate, unusual rituals, erratic behaviour, disorientated behaviour, bizarre behaviour, being uncharacteristically
loud or quiet, less careful with possessions, increased substance use (tobacco smoking, alcohol, drugs), reckless driving, risky sexual behaviours 3. Unusual movement patterns. Examples: fidgeting, restlessness, slowed (or increased) activity, dyskinesia/uncontrolled jerky movements No feedback provided. No change. 4. Loss of skills. Examples: planning/decision making difficulties, loss of mastered skills, impaired judgement No feedback provided. No change. 5. Withdrawing from social situations. Examples: withdrawal, isolating self from contact, becoming closed to loved ones, becoming uncommunicative No feedback provided. • Cluster deleted. Content incorporated into reduction in regular activities (#14).
6. Self-initiated behaviours. Examples: direct requests for help, indirect care-seeking (for example, confirming appointments), seeking to be physically close to others, self-reported worsening of mental health • The term care seeking has negative conations for some people. For example, care seeking might be seen as attention seeking. • Alternative names for the cluster include “Report from …”, “Seeking to be close to others” (or the opposite), “Change in care-seeking behaviour” (change in frequency, care setting, and care providers), “Increased input”, “Exploring further resources”, “Increased requests for assistance”, “Self-reporting help seeking, • The term care seeking has been removed. • Confirming of appointments has been removed as an example. • This cluster has examples that are broader than treatment specifically (for example, seeking to be close to others extends to gaining assistance from carers). 6. Self-initiated requests for assistance. Examples: direct requests for help, indirect indications of need for support, seeking to be physically close to others, worsening of mental health
9. Increases in the use of restrictive practices. Examples: use of seclusion, use of physical or mechanical restraint, increased use of medications administered/taken as needed (known as PRN medications), increased level of observation • Split in two – physical and mechanical restraint versus PRN medications. • The distinctions between these practices are recognised. Splitting them, however, would seem to create a level of specificity/precision not afforded to other signs of deterioration. This reasoning may be sufficient to keep them together. 10. Unresponsiveness to care. Examples: unexpected seeking care, unresponsiveness to de-escalation attempts, self-medication, not following expected improvement pathway/trajectory • Cluster name needs changing to reflect the signs better. • The examples relate to treatment rather than care more generally. • The examples are about treatment. 10. Unresponsiveness to treatment. Examples: unexpected re-admission/return seeking treatment, unresponsiveness to de-escalation attempts, not following expected improvement pathway/trajectory
11. Constantly changing symptoms of a mental health condition. Example: changing from loud and demanding to withdrawn and quiet • Cluster name needs changing to focus on behaviour. • This cluster could probably be combined with unusual ways of behaving (#2). • Cluster deleted. Content incorporated into unusual ways of behaving (#2). 12. Physiological/medical. Examples: medical deterioration (including delirium), autonomic arousal (for example, sweating, increased adverse effects of medication, unplanned weight loss • Unexpected weight gain needs to be added to the examples. • Unexpected weight gain added to the examples. • Cluster name changed. 12. Physiological/medical deterioration. Examples: medical deterioration (including delirium), autonomic arousal (for example, sweating, increased pulse), adverse effects of medication, unplanned weight loss/gain
13. Poor daily self-care. Examples: poor and hygiene, disturbed sleep patterns (for example, increased or decreased sleep time), staying in bed longer, eating/appetite changes • Add staying in one position for numerous to the examples – although this example may be too specific. • Example considered too specific for inclusion. 14. Reduction in regular activities. Examples: inability to work, reducing or stopping normally enjoyed activities, changes in daily routines, difficulty with performing daily living activities • Add withdrawing from social situations (#5) to this cluster. • Content from withdrawing from social situations (#5) added to this cluster. 14. Reduction in regular activities. Examples: inability to work, reducing or stopping normally enjoyed activities, changes in daily routines, difficulty with performing daily living activities, withdrawal, isolating self from contact with others
21. Appearing challenging during conversations. Examples: conflictual, accusatory, argumentative, dominating, intrusive, demanding, irritated, volatile/reactive, sensitivity to perceived provocation, low tolerance of others • These behaviours may be appropriate in certain situations. • reliability might be poor for this cluster. • Along with appearing disconnected during conversations (#22), appearing distracted during conversation (#23), and difficulty following conversations (#25), this cluster relates to the single issue of participating in conversation. • Clusters #21, #22, #23, and #25 have been combined. 21. Difficulty participating in conversations. Examples: appearing distracted, disconnected, or challenging during conversations; having difficulty following conversations
22. Appearing disconnected during conversations. Examples: disinterested, passive, unaware of others, secretive, not hearing others • Along with appearing challenging during conversations (#21), appearing distracted during conversation (#23), and difficulty following conversations (#25), this cluster relates to the single issue of participating in conversation. • Cluster deleted. Content incorporated in appearing challenging during conversations (#21).
23. Appearing distracted during conversation. Examples: tangential thinking off topic, never returning to the original topic), distractibility (changing topic during due to something in the environment), inability to complete ideas (stopping in the middle of a train of thought), impaired concentration • Along with appearing challenging during conversations (#21), appearing disconnected during conversations (#22), and difficulty following conversations (#25), this cluster relates to the single issue of participating in conversation. • Cluster deleted. Content incorporated in appearing challenging during conversations (#21). 24. Speech during conversations. Examples: unusual intonation, stress, or rhythm; reduced (or increased) loudness/volume; reduced (or increased) flow of words; inability to speak • Cluster may have poor specificity. • Cluster name changed. 24. Unusual speech during conversations. Examples: unusual intonation, stress, or rhythm; reduced (or increased) loudness/volume; reduced (or increased) flow of words; inability to speak
25. Difficulty following conversations. Examples: slow responding, limited understanding of conversation, inability to respond to questions • Along with appearing challenging during conversations (#21), appearing disconnected during conversations (#22), and appearing distracted during conversation (#23), this cluster relates to the single issue of participating in conversation. • Cluster deleted. Content incorporated in appearing challenging during conversations (#21). 26. Facial expressions. Examples: poor eye contact, uncharacteristic facial expression, crying/signs of upset • Culturally, avoiding eye contact may be appropriate – adjust to “uncharacteristic eye contact” or “changes in eye contact”. • Adjustment made to eye contact example. • Cluster name changed. 26. Uncharacteristic facial expressions. Examples: uncharacteristic eye contact/facial expressions, crying/signs of upset
32. Reduced safety of property. Examples: attacks on objects, burning of objects No feedback provided. No change. 33. Self-reported sadness. Examples: feeling low, feeling teary, feeling fragile, feeling depressed, feeling despair, feeling flat • Could be combined with self-reported fear (#34), anger (#35), sense of self (#36), and uncontrollable thought processes (#37). • Clusters #33, #34, and #35 have been combined because they all relate to negative emotions. • Clusters #36 and #37 focus on sufficiently distinct concepts to justify separation. 33. Self-reported negative emotions. Examples: feelings of sadness (despair, weeping, depression), fear (anxiety, worry, stress, terror), or anger (frustration, rage)
34. Self-reported fear. Examples: feeling anxious, having worrying thoughts, feeling agitated, feeling stressed/not coping, feeling fearful • Low specificity, so concerned about clinical yield. • This cluster may be redundant, because it is affected by domains. • Remove agitated, because it is irrelevant. • Cluster deleted. Content incorporated in self-reported sadness (#33). 35. Self-reported anger. Examples: feeling frustrated, feeling angry No feedback provided. • Cluster deleted. Content incorporated in self-reported sadness (#33). 36. Self-reported sense of self. Examples: feeling worthless, feeling hopeless, feeling low (or high) self-esteem, feeling low (or high) in confidence • A low-yield indicator for high-risk outcomes – perhaps replace with a mood score. • Cluster name could be improved. 36. Self-reported negative or inflated perceptions of self. Examples: feeling worthless, feeling hopeless, feeling low (or high) self-esteem, feeling low (or high) in confidence
37. Self-reported uncontrollable thought processes. Examples: racing thoughts, rumination (overthinking issues), obsessive thinking No feedback provided. No change. 38. Social circumstances and environment. Examples: situational crisis/significant change in social circumstances (for example, having to move house), inability to cope in a different environment (for example, hospital emergency department), inability to cope with environmental stimuli (for example, too much noise) • Need to use Trauma Informed Care language. • Social circumstances cannot be defined as a behaviour, and many variables would be dichotomous, not allowing for tracking • Cluster deleted. Social circumstances and environments are risk factors rather than behaviours. Examples are not behaviours, so they have not been merged into other clusters.
Appendix D: Proposed Clusters of Signs with their Examples Cluster of Signs Examples Reported Change Self-initiated requests for assistance direct requests for help, indirect indications of need for support, seeking to be physically close to others, self-reported worsening of mental health Requests for treatment from healthcare professionals or those close to the person information/concern from family carers, information/concern from emergency service workers Self-reported negative or inflated sense of self feeling worthless, feeling hopeless, feeling low (or high) self-esteem, feeling low (or high) in confidence Self-reported uncontrollable thought processes racing thoughts, rumination (overthinking issues), obsessive thinking Self-reported negative emotions feelings of sadness (despair, weeping, depression), fear (anxiety, worry, stress, terror), or anger (frustration, rage) Distress