Dementia and the communication of pain In 2008 it was estimated that world wide there were 30 million people with meantime and it is projected that over the next 42 years these prevalence rates will more than treble to 100 million (Alchemist’s Disease International, 2008). Dementia represents a complex interaction of signs and symptoms that occur as a result of damage to the brain that is usually irreversible and progressive in nature. The ensuing changes often have an impact on the person’s ability to successfully communicate pain.
The types of symptoms and changes that are experienced by the person ABSTRACT Dementia may alter the experience of pain and the ability to communicate it; his will, in turn, result in poor pain detection and inadequate treatment. The am of this literature review is to identify the observational pain scales that have clinical utility and feasibility for use with people living with dementia in the community by district nurses in their daily practice.
It was found that a consensus could not be reached on which tool to use in clinical practice. A further evaluation of the Non-communicative Patients Pain Assessment Instrument has improved its feasibility for use in the community environment, as it can be administered by family careers. This literature review includes that observational pain scales need to be validated for use in the community and that there is a need to consider the involvement of the informal career in the assessment of pain.
KEY WORDS Dementia w District nursing plan w Observational pain scale 438 with dementia depend on the location of the cognitive impairment (Creaser, 2004). Damage to the dominant parietal lobe, for example, affects the person’s language capacity resulting in dysphasia (Creaser, 2004). Receptive dysphasia diminishes the person’s ability to understand, for example, an enquiry regarding the presence of pain, made to them by a nurse. Expressive dysphasia will impair the person’s ability to describe discomfort and pain (Person and Bonnet, 2004).
This may be compounded by the person’s diminished ability to think abstractly, which may also lessen the person’s capability to reliably use scales and tools (Person and Bonnet, 2004; Sleepwalk et al, 2006). Reduced memory capacity, caused by damage to the temporal lobe, means that the person may not be TABLE to recall pain episodes and only respond to the present pain experience (Person and Bonnet, 2004). Evidence demonstrates that pain recognition rates are worse in proportion to the agree of cognitive impairment (Australian Pain Society, 2005).
The consequences of untreated Pam There are many consequences of untreated pain. The underlying cause of the pain may not be recognized (Australian Pain Society, 2005; Herr et al, AAA) and may exacerbate the symptoms of dementia (Person and Bonnet 2004, Herr et al, AAA; Sleepwalk et al, 2006) resulting in unwanted behaviors such as irritability, aggression and resistance to care (Person and Bonnet, 2004; Sleepwalk et al, 2006).
The presence of persistent pain can also affect psychological well being and cause depression, sleep disturbance, impairment of functional abilities and diminished colonization (American Geriatrics Society, 2002; Herr al, Bibb), generally reducing the individual’s quality Of life (Australian Pain Society, 2005; Herr et al, Bibb). Other pain-associated consequences include slowed rehabilitation and increased risk of adverse side effects rising from numerous prescriptions (American Geriatrics Society, 2002) and related family distress (Person and Bonnet, 2004).
Aim The current literature and pain guidelines focus on tools and processes that are largely applicTABLE to the acute hospital and residential care sectors, where there are trained staff British Journal of Community Nursing Volvo 14, No 10 TABLE 1. Pain behaviors and indicators Facial expressions Slight frown, sad, frightened face, grimacing wrinkled forehead, closed or tightened eyes. Any distorted expression, rapid blinking Overvaluations, visualization Sighing, moaning, groaning, grunting, chanting, calling out, noisy breathing Asking for help, verbally abusive Body movements Rigid, tense body posture, guarding fidgeting.
Increased pacing, rocking. Restricted movement. Gait or mobility changes Changes in interpersonal interactions Aggressive, combative, resisting care. Decreased social interactions, socially inappropriate, disruptive, withdrawn Changes in activity patterns or routines Refusing food, appetite change, increase in rest periods or sleep, changes in rest patterns, sudden cessation of common routines, increased wandering Mental status changes Crying or tears, increased confusion, irritability or distress continuously over the 24-hour periods.
This review aims to identify observational pain scales that have clinical utility and are feasible in their use for people with dementia by district nurses in their necessarily intermittent daily community practice. Search strategy Inclusion criteria involved articles that were published between 1992-2009; availTABLE in English, accessible for retrieval and peer reviewed. An initial literature search was conducted using OBESE host (CANAL plus with full text, Psych Info), Ovid SP and Expanded Academic ASAP databases.
The following search terms and key words were used in isolation and in combination: dementia; Alchemist’s disease; cognitive impairment; non-verbal adults; community nursing home health care; pain assessment; pain measurement; district nurse; home health care nurse; non- professional care givers; informal careers; family care givers. The reference list of articles sourced was also reviewed to identify further relevant articles.
Online websites that provide access to clinical guidelines such as the National Guideline Clearing house www. Guideline. Gob and www. Tributaries. Com were searched with the key words ‘dementia’ and ‘pain assessment’. Further evidence-based databases: the Cochrane library and The Joanna Briggs Institute www. W. Snowboarding. Deed. AU were searched using the key terms ‘dementia’ or ‘pain assessment’. The search identified four systematic reviews that provided the best availTABLE evidence regarding pain assessment practices.
The assessment of pain Salience (2007) offers the following operational definition of pain that can be applied to pain measurement with this cohort: ‘Pain is an unpleasant, subjective experience that can be communicated to others either through self report when possible or through a set of pain-related behaviors’ British Journal of Community Nursing Volvo No 439 Several authors express concern that each individual’s threshold experience of pain will be influenced by the particular type of dementia.
They recommend that discerning the subtype and staging of the meantime is relevant in pain assessment (Schroeder et al, 2005; van Here et al, 2007; Sleepwalk et al, 2006). Close, Barr and Briggs (2005) found that different groupings of pain behaviors (verbal and body language; acute behavioral symptoms; and changes to mood or behavior) were identifiTABLE according to the level of dementia. For those in the late stage of the illness, body movements were the commonly occurring behavior to indicate pain.
The primary factor that determines the use of glittering or observational pain scales is generally that of the communicative ability of the person with meantime. The basic assumption is that the most accurate and reliTABLE evidence for identifying the presence and intensity of pain is through a first-hand report and description by the individual who is experiencing the pain (American Geriatrics Society, 2002; Person and Boone’, 2004; Herr et al, Bibb; Sleepwalk et al, 2006).
The complicating factor is that to complete a scale, the individual needs to be TABLE to understand the task and to convey the pain event; thus sleepover scales rely on abstract thinking ability (Person and Bonnet, 2004; Sleepwalk et al, 2006). Responses to these scales will become less reliTABLE as dementia progresses, but those with mild to moderate levels of impairment (indicated by a score of 18 or more on the mini-mental state exam, MOMS) are likely to be TABLE to respond (Hydrocephalus’s et a’, 2007).
Conversely, a study by Pupate (2006) found that 61% of people with moderate cognitive impairment (MOMS score of 1 1 or less) were TABLE to comprehend a self report scale. Even 49% of those patients with a MOMS of 6 or less were TABLE to comprehend and reliably use a scale (Pupate et al, 2006). When it is determined that the person lacks the ability o self report, an observation scale should be used. The observational approach relies on autonomic responses to pain, such as the expression of distress or suffering (Hydrocephalus’s et al, 2007).
The easily ObservTABLE indicators Of pain are facial expressions, overvaluations, vocalic- TABLE 2. Description of observational pain scales Observation scale Recommendations by systematic review Abbey pain scale ABBEY Herr et al with GAG indicators Wilson et al (2009) 6 items on a 0-3 scale. Score range 0?18. Score interpretation: 0-2 no pain; 3-7 mild; 8-13 moderate; 14+ severe. Nurse administered, supported by instructional poster. Takes one minute to complete. Assessment of discomfort in dementia protocol (ADD) Herr et al (2006) 5 pain behavior categories.
Nurse-led assessment and treatment plan using five steps. Lengthy to complete, extensive training and documentation. Provides guidance On assessment and protocols for intervention. Discomfort scale for dementia of the alchemist’s type (ADS-OAT) Stole et al (2005) 9 items, 0-3 scale. Score range 0-27. Complex administration and scoring, after 5 minutes observation 15 minutes post pain event. Developed for research. Rater training program and practice sessions required . DOLOROUS 2 sleepwalk et al (2006) 10 items, 0-3 scale. Score range 0-30.
Score of 5 and over indicates pain. Nurse administered. Takes five minutes to complete. Lexicon and instructions for use. French tool that has not been evaluated in English. Lichenin Complementary pour Personnel Gages (CPA) 11 items, 0-4 scale. Score range 0-44. French tool, unavailTABLE in English Nan-communicative patients pain assessment instrument (NONPAYING) 17 items, 6 point scale. Score range 0-30. No score interpretation. Administered by untrained care givers. Requires five minutes observation during activity, 30 seconds to score.
One hour training with instructional DVD and guidelines for rating of pain intensity. Tested in CALL population. Pain assessment checklist for seniors with limited ability to communicate (PASCAL) 60 item check list utilizing retrospective recall pain behaviors. Score range 0-60. No score interpretation. Nurse administered. Takes five minutes to complete. Instructions for use are availTABLE on the checklist pain assessment in advanced dementia (PAP AND) Sleepwalk et al (2006) 5 items, 0-2 scale. Score range 1-10. Score interpretation unclear.
Requires five minutes observation, 30 seconds to score. Instruction manual and video plus 2 hour training Proxy pain questionnaire (UPS) 4 items, admit sisters by untrained care giver. Description of scale actions and body movements (Herr et al, Bibb). However, a person with severe dementia may not present with the classic signs associated with pain. They may instead run the gamut from social withdrawal, aggression or facial indications to subtle changes in behaviors (British Pain Society and British Geriatrics Society, 2007; Schroeder et al, 2005).
We need to remain mindful that these butte changes can also be inclusive of issues other than pain (Herr et al, 2006; Wilson et al, 2009). If endings The literature search revealed four systematic reviews whose focus Was on the use of observational pain scales for people with advanced dementia. Given that a total of 14 such scales were identified by the authors, only those scales that received either the highest ratings in psychometric qualities across the four reviews, or those which have been recommended by reference to further evaluation criteria, have been re-examined for the purpose of this literature review.
However, the four systematic reviews did not reveal a consensus on the definitive scales to use in clinical practice, a description of these scales is shown in TABLE 2. There were several reasons for the disparity in consensus. Each review used different frameworks to appraise the content and comprehensiveness of the observational pain scales. Inclusion criteria also varied across the reviews. Herr et al (AAA) and Wilson et al (2009) effectively excluded assessment tools if they were not availTABLE in English, which disqualified the DOLOROUS 2 and the L’ Chalet Compartmental Pour Personnel Gages (CPA).
Stole t al (2005) reviewed only those tools which had been tested with a cognitively impaired population and excluded the Assessment of Discomfort in Dementia on the grounds that it was a treatment algorithm. Sleepwalk et al (2006) excluded the Discomfort of Dementia in Alchemist’s Type as it measured discomfort rather than pain. These exclusions all impact on the combined overall outcome. Herr et al (AAA) added a further level of appraisal by identifying the scales that include the six behavioral pain indicators laid down by the American Geriatrics Society pain guidelines, which were the Pain Assessment Checklist for
Seniors with Limited Ability to Communicate, Assessment of Discomfort in Dementia and ABBEY pain scales. Sleepwalk et al (2006) also applied two further evaluate- action criteria against the four ‘best’ performing tools. First, the tools Were evaluated for their ability to ‘detect subtle changes in behavior, which only the ‘Pain Assessment Checklist for Seniors with Limited Ability to Communicate’ achieved. The second criterion looked at how extensively each of the four tools had been tested in different clinical or care settings (clinical utility) and found that only the DOLOROUS 2 had been most comprehensively tested.
For the purposes of this review, the observational tools identified in the systematic reviews have been further scrutinized in the context of use within the community nursing environment. Of the ten scales outlined in TABLE 2, neither the CPA nor DOLLOPS 2 tools have been evaluated in English and therefore will be excluded from further inspection. As identified by Herr et al (AAA), tools should be evaluated on the basis of their use in a specific clinical setting. Concerns were raised that many of the tools have only limited testing in one location, usually residential care and none have been tested in the community.
The ABBEY pain scale and some items on the Pain Assessment Checklist for Seniors with Limited Ability require monitoring over time. There are resource allocation issues associated with maintaining a community nursing presence in the clients home over a 24 hour period that will create a barrier to achieving this. There is a need to determine which tools can be administered by non-professional or family careers. The Non-communicative Patients Pain Assessment Instrument (NONPAYING) was specifically developed for use by nursing auxiliaries, a sample of this scale is shown in Figure 1 . The testing of the Discomfort
Scale for Dementia of the Alchemies Type and the Present Pain Questionnaire included nursing auxiliaries; the ABBEY and Pain Assessment Checklist for Seniors with Limited Ability were developed with nurses but deemed to have potential for use with other care givers. The other tools did not specify the skill element required. The complexity and time taken to complete a tool must also be taken into consideration.