RESEARCH ARTICLE

Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives’ perspectives Heather E. Barry1, Carole Parsons1, A. Peter Passmore2 and Carmel M. Hughes1 1

Clinical and Practice Research Group, School of Pharmacy, Queen’s University Belfast, Belfast, UK Department of Geriatric Medicine, School of Medicine, Queen’s University Belfast, Belfast, UK Correspondence to: C. M. Hughes, E-mail: [email protected]

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Objectives: This study aims to determine pain frequency amongst care home residents with dementia, to investigate variables associated with pain, to explore analgesic use among residents and to seek residents’ relatives’ views on provision of care and management of pain by the care home. Methods: Structured face-to-face interviews were conducted with residents, nursing staff and relatives from nine dementia care homes in Northern Ireland, between May 2010 and March 2012. Demographic information was collected from participants, neuropsychiatric tests were used to assess residents’ cognitive functioning, medication use was determined from care home records and residents’ pain was assessed using a verbal descriptor scale. Relatives’ views were sought on care provision and management of pain. Results: Forty-two residents, 16 nurses/care assistants and 35 relatives participated; the participation rate of residents was low (27.6%). Most residents were suffering moderate–severe dementia, and some residents (26.2%) were unable to provide a self-report of pain. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview, compared with residents (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). Most residents (88.1%) were prescribed with analgesia; non-opioid analgesics were most commonly prescribed. High proportions of residents were prescribed with psychoactive medications. Antipsychotic drug use was associated with presence of pain (p = 0.046). Conclusions: This study has reinforced the challenge of assessing and managing pain in this resident population and highlighted issues to be addressed by long-term care providers and clinicians. Participation of people with dementia, and their families, in healthcare research needs to be improved. Copyright # 2014 John Wiley & Sons, Ltd. Key words: care homes; dementia; older people; pain; prescribing History: Received 2 October 2013; Accepted 4 March 2014; Published online 15 April 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4111

Introduction When people with dementia struggle to manage dayto-day activities with increasing cognitive decline, or have increased nursing requirements, transfer to a care facility is often inevitable. It has been estimated that 30–40% of people with dementia live in care homes (Alzheimer’s Society, 2008; Department of Health, 2009), in either residential or nursing units. National and regional dementia strategies have sought to address disparities in the quality of care of people with Copyright # 2014 John Wiley & Sons, Ltd.

dementia, with an emphasis on person-centred care (Department of Health, 2009; Department of Health, Social Services and Personal Safety Department of Health, Social Services and Public Safety, 2011). Recognition and management of pain and discomfort is one area in which the principles of person-centred care should apply. It is well established that older people with dementia are at risk of having pain that is both under recognised and under treated (Horgas and Tsai, 1998; Nygaard and Jarland, 2005; Husebo et al., 2008; Zwakhalen Int J Geriatr Psychiatry 2015; 30: 55–63

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et al., 2009; Lin et al., 2011); however, there are limited data that originate from the UK or Ireland (Closs et al., 2004; Schofield, 2006; Cairncross et al., 2007; Onder et al., 2012). The authors were keen to explore frequency and treatment of pain in dementia care homes in Northern Ireland to complement work already conducted within this area by the research team (Barry et al., 2012, 2013) and to identify areas for further development. In addition, little work has sought to explore variables that may be associated with the presence of pain in care home residents with dementia, such as presence of depression (Zwakhalen et al., 2009; Lin et al., 2011; Slaughter et al., 2011). Poor management of pain in people with dementia has been attributed, in part, to the difficulty in accurately assessing the presence and intensity of pain, especially as a person’s cognitive and communication abilities worsen. Care home staff may have to increasingly rely on surrogate reports or behavioural indicators of pain (Hadjistavropoulos et al., 2007). Therefore, the authors wanted to compare pain reports for residents provided by the residents themselves, the care home staff and relatives. Analgesic drugs can often be under used or prescribed inappropriately, for example, ‘when required’ instead of regularly scheduled (Nygaard and Jarland, 2005; Reynolds et al., 2008). It has been reported that psychoactive drugs, which may be indicated in certain circumstances for the short-term management of behavioural and psychiatric symptoms associated with dementia, could mask behaviours that are indicative of pain (Cipher et al., 2006). Recent work has shown that treatment of pain, even with simple analgesia such as paracetamol, can reduce agitation and improve behaviour in care home residents with dementia (Husebo et al., 2011). Further exploration is needed to determine if pain management in care homes in Northern Ireland follow these reported patterns. The present study therefore aimed to answer the following research questions:

• • • •

What is the frequency of pain among care home residents with dementia, and does it vary depending upon from whom the pain report is taken? What types of analgesic medications are used by care home residents with dementia, and are there any evident prescribing patterns for pain? What variables are associated with the presence of pain among these residents? What are the perceptions of relatives of residents with dementia of care provided by the care home and the treatment of pain?

Copyright # 2014 John Wiley & Sons, Ltd.

Methods Setting and participants

The study was conducted in nine dementia care homes in Northern Ireland (n = 362 residents), which provided a mixture of nursing and residential care. These homes were owned by a large company, which had several care homes across the UK. A census approach was taken to sampling of residents (with the aim of including all residents in the study) provided they met the inclusion criteria (see later). To improve data accuracy, the researcher sought to interview the resident, their named nurse or care assistant, and a relative of the resident (a triad). Ethical approval was obtained from the Office for Research Ethics Committees in Northern Ireland and the care home company’s own ethics committee. Care home recruitment

After initially approaching the company area manager, an invitation pack (comprising a cover letter, information sheet and consent form) was mailed to all of the care homes with specialised dementia units (n = 9). All agreed to participate. Participant recruitment

Residents were eligible to participate if they had been resident in the care home for 4 weeks or more, had a diagnosis of dementia and were not participating in any other research studies. Residents were excluded if they were considered by the manager to be too ill, weak or frail to participate. Nurses/care assistants were eligible to participate provided they were the staff member most regularly assigned to care for the resident. Residents’ relatives were eligible to participate provided they had contact with the resident at least once every 2 weeks, to improve the accuracy of the data provided. The care home manager (hereafter known as the manager) identified residents based upon the inclusion criteria and the resident’s clinical condition. Eligible nursing/care assistant staff and relatives of residents were also identified. Potential participants were approached by the manager (or another member of staff) and followed-up after one week. If they agreed to participate, an arrangement was made for the researcher to conduct the interview in the care home, at a mutually convenient time. Int J Geriatr Psychiatry 2015; 30: 55–63

Pain in care home residents with dementia

Data collection

Written informed consent (or assent) was obtained for every participant before commencing data collection. Residents’ mental capacity was assessed (Mental Capacity Act, 2005) by the manager. If residents were unable to provide consent, their next of kin was approached instead. If residents did not have a next of kin, the care home manager was asked to provide the assent. This approach was deemed acceptable by the Research Ethics Committee. Data were collected between May 2010 and March 2012. Resident interview

The resident interview (Table 1) comprised six sections that sought to gather demographic information, medical history and a list of current prescribed medication. Neuropsychiatric tests were used to determine residents’ cognitive functioning and the presence of depression. Residents were asked to rate the presence of pain, both at the time of the interview and on an average day, using a 7-point verbal descriptor scale. This was chosen to facilitate comparison with another

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study the research team was conducting in a community-dwelling population. It was anticipated that there could be great variation in the amount of information that was provided by residents, depending upon their communication abilities. Any information that was still missing following the resident interview was collected during the nurse/care assistant interview, checked in the resident’s care home records or with their general practitioner. Nurse/care assistant interview

Neuropsychiatric tests administered (Table 1) during the nurse/care assistant interview were used, along with data collected during the resident interview, to stage dementia in residents (mild, moderate or severe) using the Clinical Dementia Rating scale (Burns et al., 2004). Nursing staff were also asked to rate the resident’s pain, using the same verbal descriptor scale used by residents. Relative interview

In addition to the data collected in Table 1, relatives were presented with eight statements to which they

Table 1 Data collected from participants Resident interview Six questions collecting demographic information about the resident Six questions about the resident’s medical history Severe Impairment Battery (Panisset et al., 1994)—used to test cognitive performance in moderate to severe dementia, comprising 51 commands and low-level tasks* Cornell Scale for Depression in Dementia (CSDD; Alexopoulos et al., 1988)—used as screening tool for depression in people with dementia; also relies on information provided by an informant (nurse/care assistant in this case—see later) Full medication history taken—prescribed medications, over-the-counter medications and medication used in the past for pain Rating of pain ‘right now’ and ‘on an average day’ using a 7-point verbal descriptor scale (VDS; Shega et al., 2004): no pain, slight pain, mild pain, moderate pain, severe pain, extreme pain and pain as bad as it could be Nurse/care assistant interview Eight questions collecting demographic information about the nurse/care assistant Functional Assessment Staging (Reisberg, 1988)—used to ascertain resident’s day-to-day functioning Neuropsychiatric Inventory with Caregiver Distress (NPI-D; Burns et al., 2004)—evaluates presence (frequency, severity and distress) of 12 behavioural disturbances common in dementia Completion of CSDD Rating of the resident’s pain using VDS Relative interview Seven questions collecting demographic information about the resident’s relative Knowledge of resident’s current medication Completion of NPI-D (see previous texts) Rating of the resident’s pain using VDS Eight statements regarding perceptions of care provided by care home staff, treatment of pain and medication use. Relatives had to state level of agreement or disagreement with each statement using a 5-point Likert scale (where 1 = strongly agree, 2 = agree, 3 = neither agree nor disagree, 4 = disagree and 5 = strongly disagree) *The Severe Impairment Battery was difficult to complete with some residents; for these individuals the resident’s most recent Global Deterioration Scale was used instead (available in care home records).

Copyright # 2014 John Wiley & Sons, Ltd.

Int J Geriatr Psychiatry 2015; 30: 55–63

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had to state their level of agreement or disagreement using a 5-point Likert scale. The statements were based upon relatives’ perceptions of care provided by the care home staff, treatment of pain and medication use, and addressed issues that had emerged from the literature (Weiner et al., 1999; Cohen-Mansfield, 2002; Hall-Lord et al., 2002). Analysis

Analyses were performed with SPSS® Statistics (SPSS Inc., Chicago, IL) version 19.0. Descriptive analyses were used where appropriate. Chi-square analysis and Fisher’s exact test were used to explore associations between relatives’ responses to the statements regarding their perceptions of care and demographic data; p ≤ 0.05 was considered statistically significant. Demographic associations (relative gender, educational level (up to secondary level vs higher or further education received), if the resident had lived with the relative before care home admission, the relative’s relationship to resident (child vs sibling/niece/nephew), frequency of visits to resident (once a week or less vs 2–3 times a week or more) and relative knowledge of resident’s current medication) were investigated with response. These explorations were based upon associations previously reported (Weiner et al., 1999; Cohen-Mansfield, 2002; Hall-Lord et al., 2002). Univariate analysis was used initially to explore associations between presence of pain and the following variables: resident gender, history of psychiatric illness, use of prescribed analgesics, analgesics used in the past for pain, the staging of dementia (mild/moderate/severe), use of hypnotic/anxiolytic medication, use of antidepressant medication and use of antipsychotic medication. These associations had been reported previously in the literature (Shega et al., 2006; Husebo et al., 2008; Zwakhalen et al., 2009; Lin et al., 2011; Slaghter et al., 2011). Variables associated with the presence of pain in the univariate analyses (p ≤ 0.25) were then further studied in a binary logistic regression model; p ≤ 0.05 was considered statistically significant. Results One hundred and fifty-two residents met the inclusion criteria, and 42 of these residents took part in the study (Figure 1), providing a participation rate of 27.6%. Additionally, 16 different nurses/care assistants (some nurses/care assistants provided information for more than one resident) and 35 residents’ relatives Copyright # 2014 John Wiley & Sons, Ltd.

Figure 1 Participant flow chart for residents.

participated in the study (seven residents did not have a relative or next of kin who could take part). The characteristics of participants are summarised in Table 2. The majority of residents (n = 36, 85.7%) had moderate or severe dementia. Pain reporting

Figure 2 shows the pain reports for residents provided by the residents themselves, their nurses/care assistants and their relatives, both at the time of the interview and on an average day. The majority of residents were able to provide a self-report of pain, but 26.2% of participants were unable to. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview than the residents themselves (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). There were no significant differences observed between the resident and nurse/care assistant reports of pain on an average day (p = 0.233) and the nurse/care assistant and relative reports of pain on an average day (p = 0.065). Medication usage

All residents were prescribed with medication, taking 11.1 medications on average. The number of medications taken by residents was not affected by the stage of dementia (p = 0.822). Analgesics taken by residents were categorised according to the British National Formulary therapeutic class (Joint Formulary Committee, 2012, Table 3). A high proportion of residents (n = 37, 88.1%) were prescribed with at least one analgesic. Non-opioid (e.g. paracetamol) and compound analgesic preparations (e.g. paracetamol and codeine) were most commonly prescribed, although further examination of residents’ medication administration records revealed that, in the majority of residents, these Int J Geriatr Psychiatry 2015; 30: 55–63

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Table 2 Participant characteristics Characteristic Residents (n = 42) Gender, female Age, y Ethnicity, white Married Widowed Divorced Single Secondary level education received Higher/further education level received Months in care home Positive family history of dementia Number of medical conditions SIB score (0–100) GDS FAST CDR, moderate or severe CSDD score Number of prescribed medications Nurses/care assistants (n = 16) Gender, female Age, y Ethnicity, white Time since qualification, y Qualification, care assistant Time working in care home, y Working arrangements, full time NPI-D score Relatives (n = 35) Gender, female Age, y Ethnicity, white Secondary education level received Higher/further education level received Lived with resident before care home admission Child of resident Sibling/niece/nephew of resident Visits resident once a week or less Visits resident twice a week or more Knowledge of resident’s medication NPI-D score

N (%)

Mean ± SD, range

24 (57.1) 82.1 ± 7.4, 64–99 42 (100.0) 9 (21.4) 20 (47.6) 3 (7.1) 10 (23.8) 38 (90.5) 4 (9.5) 19.5 ± 17.1, 2–72 16 (38.1) 3.9 ± 1.5, 0–8 87 ± 2.8, 85–89* 5.0 ± 1.0, 3–7 6.7 ± 2.2, 4–7a 36 (85.7) 4.1 ± 2.5, 0–11 11.1 ± 4.9, 4–27 14 (87.5) 36.4 ± 10.6, 22–53 15 (93.8) 9.9 ± 10.1, 0–31 7 (43.8) 5.3 ± 4.5, 0–17 12 (75.0) 20.3 ± 12.9, 1–52 27 (77.1) 51.8 ± 8.7, 29–66 35 (100.0) 21 (60.0) 14 (40.0) 5 (14.3) 23 (65.7) 12 (34.3) 12 (34.3) 23 (65.7) 25 (71.4) 21.3 ± 15.9, 0–67

SIB, Severe Impairment Battery; GDS, Global Deterioration Scale; FAST, Functional Assessment Staging; CDR, Clinical Dementia Rating; CSDD, Cornell Scale for Depression in Dementia; NPI-D, Neuropsychiatric Inventory with Caregiver Distress; y, year. *Only two residents completed the SIB, attaining scores of 85 and 89.

medications were prescribed ‘when required’ (as needed). Other types of analgesia, such as opioids, drugs for neuropathic pain (e.g. gabapentin, pregabalin) and non-steroidal anti-inflammatory drugs were only prescribed for small numbers of residents (14.3%, 11.9% and 19.0%, respectively). There were no significant associations observed between severity of dementia and the types of analgesics prescribed for residents. Hypnotic and anxiolytic medication use was found to be high among residents (n = 34, 81.0%); benzodiazepines were commonly prescribed. Antipsychotic drugs were prescribed for over one-third of residents Copyright # 2014 John Wiley & Sons, Ltd.

(n = 16, 38.1%). Seventeen residents (40.5%) were prescribed with antidepressant medication, predominantly selective serotonin re-uptake inhibitors. Variables associated with pain

Univariate analyses were conducted using the nurse/ care assistant report of pain as this was complete for all residents. The analyses showed that residents who were taking prescribed analgesic medication (p = 0.060) and residents who were taking antipsychotic Int J Geriatr Psychiatry 2015; 30: 55–63

H. E. Barry et al.

60 60

% of residents

50 40 30

Resident Nurse/care assistant Relative

20

Relatives’ perceptions of pain and treatment

10 0

No pain

Pain

Missing/unable to report

Pain report 'at the time of interview' 80 70

% of residents

was not found to be associated with the presence of pain (p = 1.000). Logistic regression analyses revealed that residents’ current use of prescribed antipsychotic medication was significantly associated with the presence of pain at the time of the interview (p = 0.046).

60 50 40

Resident Nurse/care assistant Relative

30 20 10 0 No pain

Pain

Missing/unable to report

Pain report 'on an average day' Figure 2 Comparison of pain reports provided by residents, nurses/ care assistants and relatives, using the verbal descriptor scale.

Table 3 Analgesia prescribed to residents N (%) Non-opioid analgesics and compound preparations Co-codamol (paracetamol and codeine) Nefopam Paracetamol Opioid analgesics Buprenorphine Codeine phosphate Fentanyl Morphine salts Tramadol Drugs for neuropathic pain Amitriptyline Gabapentin Pregabalin Non-steroidal anti-inflammatory drugs Diclofenac Meloxicam Topical products

8 (19.0) 1 (2.4) 29 (69.0) 1 (2.4) 2 (4.8) 1 (2.4) 1 (2.4) 1 (2.4) 2 (4.8) 1 (2.4) 2 (4.8) 1 (2.4) 1 (2.4) 6 (14.3)

medication (p = 0.044) were significantly more likely to be reported to be experiencing pain at the time of the interview by nurses/care assistants than residents who were not taking these medications. Severity of dementia Copyright # 2014 John Wiley & Sons, Ltd.

Relatives’ responses to statements regarding their perceptions of pain and its treatment within the care home are outlined in Table 4. Although most relatives felt that they were kept well informed about the resident’s medical condition (88.6%), relatives who were a child of the resident were significantly more likely to strongly agree/agree that they were kept well informed about the resident’s medication (p = 0.003), compared with those who were a niece or nephew of the resident. One-fifth of relatives felt that the resident experienced pain that went unnoticed or untreated by the care home, although relatives who visited the resident frequently (2–3 times a week or every day) were more likely to be unsure or show disagreement with this statement compared with relatives who visited the resident once a week or less (p = 0.033). Although a large proportion of relatives (62.9%) agreed with the statement ‘I feel that any pain relief the resident receives is adequate’, 28.6% chose to neither agree nor disagree with this statement. Discussion This study showed that pain is common among this sample of care home residents with dementia in Northern Ireland, and reporting of pain varied significantly depending upon from whom the pain report was elicited (residents, nursing staff or relatives). Many of the deep-rooted challenges in accurately assessing and managing pain in these residents remain pertinent in this sample, and these will need to be considered and dealt with by managers, nursing staff and clinicians when care planning for this resident population. The study had a low resident participation rate, compared with other studies of similar populations (Husebo et al., 2008; Zwakhalen et al., 2009; Goodman et al., 2011). Recruitment activities coincided with a period of restructuring within the care home company that was unsettling for staff, the residents and their families; this is likely to have impacted upon the poor participation rate. Anecdotally, the support of, and input from, care home managers, and their staff, was an important indicator of resident and relative Int J Geriatr Psychiatry 2015; 30: 55–63

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Table 4 A summary of relatives’ responses (n = 35) to statements regarding their perceptions of care provided by care home staff, treatment of pain and medication use

The care home staff keep me well informed about the resident’s medical condition The care home staff keep me well informed about the resident’s medication I feel the resident is treated with respect by the care home staff I feel that the care home staff fully understand the resident’s situation I feel that the resident experiences pain that goes unnoticed or untreated by care home staff The resident displays behaviours that lead me to believe they are experiencing pain or discomfort I feel that any pain relief the resident received is adequate I believe that the resident receives medication(s) that are unnecessary

participation. The research team found that the care homes with the greatest participation rates tended to have managers and staff that were actively interested and engaged in the study. This is supported by the work of Goodman et al. (2011), who found that the culture within a care home can directly influence the participation of residents with dementia in research studies. Prevalence of pain amongst care home residents with dementia varies within the literature (McClean and Higginbotham, 2002; Nygaard and Jarland, 2005; Zwakhalen et al., 2009), and the frequencies of pain reported in the present study are consistent with those previously reported. Likewise, the differences in pain reports provided by residents, professional carers and family members mirror findings from other studies (Werner et al., 1998; Cohen-Mansfield, 2002). Nearly three quarters of residents were able to provide a self-report of pain, despite the majority of residents having significant cognitive impairment. The verbal descriptor scale was easily understood by most residents; however, some required further explanation. Reassuringly, nurses/care assistants’ reports of pain using the verbal descriptor scale were similar to those provided by residents. Thorough training in the use of observational pain scales for care home staff is vital to ensure that pain is recognised, assessed and managed in a timely manner (Barry et al., 2012). The researcher found, following informal discussion, that many nursing staffs were not familiar with the observational pain assessment tools available for use in these residents. Given the high proportion of residents who were able to provide a self-report of pain, it would have been useful to discern what guidance was in place across the care homes for obtaining pain reports directly from residents, before relying on observational Copyright # 2014 John Wiley & Sons, Ltd.

Strongly agree/ agreeN (%)

Neither agree nor disagreeN (%)

Disagree/strongly disagreeN (%)

31 (88.6)

2 (5.7)

2 (5.7)

26 (74.3)

4 (11.4)

5 (14.3)

32 (91.4) 25 (71.4)

2 (5.7) 6 (17.1)

1 (2.9) 4 (11.4)

7 (20.0)

5 (14.3)

23 (65.7)

19 (54.3)

3 (8.6)

13 (37.1)

22 (62.9) 5 (14.3)

10 (28.6) 8 (22.9)

3 (8.6) 22 (62.9)

methods or surrogate reports. Previous work has suggested that residents with dementia are often assumed to be unable to provide a self-report of their pain by care home staff (Barry et al., 2012). The mean number of medications taken by residents was similar to that reported previously (Patterson et al., 2010). The frequent use of non-opioid and compound preparations in this sample is consistent with previously reported hesitancy among clinicians and healthcare staff to use strong analgesia in people with dementia (Barry et al., 2012). Although many residents were prescribed with analgesia, it was concerning to find that the practice of prescribing such drugs on a ‘when required’ basis continues (Nygaard and Jarland, 2005; Reynolds et al., 2008). The study team did not determine if ‘when required’ analgesics were administered to residents, or how frequently this occurred, which would be a useful output in future work. The care homes sampled did not have any guidelines in place for the assessment of pain prior to administration of ‘when required’ medications, and earlier work has highlighted the lack of such standardisation in care facilities in Northern Ireland (Barry et al., 2012). Explicit guidelines need to be in place to ensure that residents with dementia who are experiencing pain receive regular analgesia in a timely manner. The high use of psychoactive medications among these residents was striking. Although these medications are known to be used inappropriately in people with dementia, this study found antipsychotic prescribing to be higher than recently reported (Parsons et al., 2011; Maguire et al., 2013), despite recent policy recommendations to reduce the use of these drugs (Department of Health, 2009; Department of Health, Int J Geriatr Psychiatry 2015; 30: 55–63

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Social Services and Public Safety, 2011). Clearly, this remains a germane issue in Northern Ireland, which must be acted upon with haste. Further work should explore the factors influencing prescribing of these medications for people with dementia and factors which may be causing general practitioners to ignore the guidance on the use of these medications in this patient population. In addition, presence of pain amongst the residents sampled was found to be significantly associated with the use of antipsychotic medication. This raises questions about the appropriate management of pain in these residents, particularly considering the apparent lack of prescribing of regularly scheduled analgesia. Husebo et al. (2011) demonstrated the benefit of regular analgesia over antipsychotic medication for pain relief and reduction in behavioural problems and agitation. Other variables such as gender, severity of dementia and presence of depression amongst residents were not associated with pain in this sample, in contrast to findings from other studies (Nygaard and Jarland, 2005; Zwakhalen et al., 2009; Lin et al., 2011). Further work incorporating larger samples would be needed to confirm these findings. Relatives of the residents sampled reported that pain was managed appropriately by the care home; other studies have reported contrasting findings (Hall-Lord et al., 2002). Although many relatives felt that residents were treated with respect by the care home staff, fewer felt that the staff fully understood the resident’s situation. Respect, understanding and empathy are key indicators of person-centred care, and many recent policy documents have acknowledged the importance of this approach when caring for people with dementia (Alzheimer’s Society, 2008; Department of Health, 2009; Department of Health, Social Services and Public Safety, 2011). It may be deduced from the responses to these statements that the relationships between residents, care home staff and residents relatives are vitally important to the provision of good-quality person-centred dementia care (Bramble et al. 2009) and may, in turn, positively impact upon the successful management and treatment of pain in these residents.

been conducted in nursing or residential homes in Northern Ireland (McCann et al., 2009), or studies conducted in care home residents with dementia (Husebo et al., 2008; Zwakhalen et al., 2009; Parsons et al., 2011), shows similarities between mean age of residents, marital status, mean length of stay and number of medical conditions, although the proportion of female residents in this study is slightly lower. The authors were unable to compare the characteristics of those who participated with those who refused or were ineligible to participate. However, residents were commonly excluded because of severity of their cognitive impairment, declining health or absence of a next of kin for the provision of consent (where the manager was not willing to provide assent). Recruitment and data collection was challenging because of the presence of dementia in these residents. For example, administration of neuropsychiatric tests and the pain scale was difficult in those with limited cognitive abilities; relatives were often fearful of causing further confusion or distress to residents. The small sample size, coupled with missing data, impacted upon the statistical analyses that were performed. The regression analyses were limited by low numbers and poor representation of all categories within variables, and the chi-square test was also affected. Conclusion This study, despite its small sample size and consequent limitations, has demonstrated that the assessment and management of pain in care home residents with dementia continues to remain a challenging area for care home providers and clinical staff. As the prevalence of dementia increases and transfer to a care facility becomes likely for many dementia sufferers, this area must become a focus of attention for care home providers. Low rates of participation in dementia research, although now recognised at government level, must be addressed so that further research can continue to advance care provision. Conflict of interest

Limitations

The small sample size obviously limits the generalisability of the findings to the wider care home population, but the authors feel this is noteworthy and highlights the difficulty of conducting research involving this patient population. Comparison of characteristics of the study sample with other studies that have Copyright # 2014 John Wiley & Sons, Ltd.

Professor A. P. Passmore has received funding (educational grants) from Napp, Grünenthal and Pfizer and has spoken and/or chaired meetings for these companies. Napp, Grünenthal and Pfizer had no role in the development, analysis or reporting of the present study. The other authors have no conflicts to report. Int J Geriatr Psychiatry 2015; 30: 55–63

Pain in care home residents with dementia

Key points

•

• •

•

Semi-structured interviews were conducted with care home residents with dementia, nursing staff and relatives to determine the frequency of pain, analgesic medications prescribed and relatives’ perceptions of pain management by the care home. Pain was frequently reported amongst the sample. Many residents were able to self-report pain, despite the presence of moderate–severe cognitive impairments. Although most residents were prescribed with analgesia, often, it was not regularly scheduled. Psychoactive medications were frequently prescribed for residents. Antipsychotic medication use was found to be associated with the presence of pain in these residents. Many of the challenges related to assessment and management of pain in care home residents with dementia still remain. The processes of pain assessment and treatment must be standardised within care homes to ensure that residents in pain receive timely, good quality person-centred care.

Acknowledgements This study was funded by the Department for Employment and Learning in Northern Ireland. The authors wish to express their gratitude to the residents, their relatives and care home staff who participated in the study. References Alexopoulos G, Abrams R, Young R, Shamoian C. 1988. Cornell scale for depression in dementia. Biol Psychiatr 23: 271–284. Alzheimer’s Society. 2008. Home from Home. [Online] London: Alzheimer’s Society. Available at: http://www.alzheimers.org.uk/site/scripts/download_info. php?fileID=270. Accessed 09 September 2013. Barry H, Parsons C, Passmore A, Hughes C. 2012. An exploration of nursing home managers’ knowledge of and attitudes towards the management of pain in residents with dementia. Int J Geriatr Psychiatr 27: 1258–1266. Barry H, Parsons C, Passmore A, Hughes C. 2013. Community pharmacists and people with dementia: a cross-sectional survey exploring experiences, attitudes, and knowledge of pain and its management. Int J Geriatr Psychiatr 28: 1077–1085. Bramble M, Moyle W, McAllister M. 2009. Seeking connection: family care experiences following long-term dementia care placement. J Clin Nurs 22: 3118–3125. Burns A, Lawlor B, Craig S. 2004. Assessment Scales in Old Age Psychiatry. 2nd ed. Martin Dunitz: London. Cairncross L, Magee H, Askham J. 2007. A Hidden Problem: Pain in Older People. [Online] Picker Institute Europe: Oxford. Available at: http://www.pickereurope. org/assets/content/pdf/Project_Reports/Paincarehomes_final.pdf. Accessed 09 September 2013.

Copyright # 2014 John Wiley & Sons, Ltd.

63 Cipher D, Clifford A, Roper K. 2006. Behavioural manifestations of pain in the demented elderly. J Am Med Dir Assoc 7: 355–365. Closs J, Barr B, Briggs M. 2004. Cognitive status and analgesic provision in nursing home residents. Br J Gen Pract 54: 919–921. Cohen-Mansfield J. 2002. Relatives’ assessment of pain in cognitively impaired nursing home residents. J Pain Symptom Manage 24: 562–572. Department of Health. 2009. Living Well With Dementia: A National Dementia Strategy. [Online] Department of Health: London. Available at: http://www.dh.gov.uk/ prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/ dh_094051.pdf. Accessed 09 September 2013. Department of Health, Social Services and Public Safety. 2011. Improving Dementia Services in Northern Ireland: A Regional Strategy. [Online] DHSSPSNI: Belfast. Available at: http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf. Accessed 09 September 2013. Goodman C, Baron N, Machen I, et al. 2011. Culture, consent, costs, and care homes: enabling older people with dementia to participate in research. Aging Ment Health 15: 475–487. Hadjistavropoulos T, Herr K, Turk D, et al. 2007. An interdisciplinary expert consensus statement on assessment of pain in older persons. Clin J Pain 23: S1-S43. Hall-Lord M, Johansson I, Schmidt I, et al. 2002. Family members’ perceptions of pain and distress related to analgesics and psychotropic drugs, and quality of care of elderly nursing home residents. Health Soc Care Comm 11: 262–274. Horgas A, Tsai P. 1998. Analgesic drug prescription and use in cognitively impaired nursing home residents. Nurs Res 47: 235–242 Husebo B, Strand L, Moe-Nilssen R, et al. 2008. Who suffers most? Dementia and pain in nursing home patients: a cross-sectional study. J Am Med Dir Assoc 9: 427–433. Husebo B, Ballard C, Sandvik R, et al. 2011. Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ 343: d4065. th Joint Formulary Committee. 2012. British National Formulary. 64 ed. BMJ Group and Pharmaceutical Press: London. Lin P, Lin L, Shyu Y, et al. 2011. Predictors of pain in nursing home residents with dementia: a cross-sectional study. J Clin Nurs 20: 1849–1857. Maguire A, Hughes C, Cardwell C, et al. 2013. Psychotropic medications and the transition into care: a national data linkage study. J Am Geriatr Soc 61: 215–221. McCann M, O’Reilly D, Cardwell C. 2009. A census-based longitudinal study of variations in survival amongst residents of nursing and residential homes in Northern Ireland. Age Ageing 38: 711–717. McClean W, Higginbotham N. 2002. Prevalence of pain among nursing home residents in rural New South Wales. MJA177: 17–20. Mental Capacity Act. 2005. (c.9), London: HMSO. Nygaard H, Jarland M. 2005. Are nursing home patients with dementia diagnosis at increased risk for inadequate pain treatment? Int J Geriatr Psychiatr 20: 730–737. Onder G, Carpenter I, Finne-Soveri H, et al. 2012. Assessment of nursing home residents in Europe: the Services and Health for Elderly in Long-TERm care (SHELTER) study. BMC Health Serv Res 12: 5. Panisset M, Roudier M, Saxton J, Boller F. 1994. Severe impairment battery: a neuropsychological test for severely demented patients. Arch Neurol 51: 41–45. Parsons C, Haydock J, Mathie E, et al. 2011. Sedative load of medications prescribed for older people with dementia in care homes. BMC Geriatr 11: 56. Patterson S, Hughes C, Crealy G, et al. 2010. An evaluation of an adapted US model of pharmaceutical care to improve psychoactive prescribing for nursing home residents in Northern Ireland (Fleetwood Northern Ireland study). J Am Geriatr Soc 58: 44–53. Reisberg B. 1988. Functional Assessment Staging (FAST). Psychopharmacol Bull 24: 653–659. Reynolds K, Hanson L, Devellis R, et al. 2008. Disparities in pain management between cognitive intact and cognitively impaired nursing home residents. J Pain Symptom Manage 35: 388–396. Schofield P. 2006. Pain management of older people in care homes: a pilot study. Br J Nurs 15: 509–514. Shega J, Hougham G, Stocking C, et al. 2004. Pain in community-dwelling persons with dementia: frequency, intensity and congruence between patient and caregiver report. J Pain Symptom Manage 28: 585–592 Shega J, Hougham G, Stocking C, et al. 2006. Management of noncancer pain in community-dwelling persons with dementia. J Am Geriatr Soc 54: 1892–1897. Slaughter S, Eliasziw M, Morgan D, Drummond N. 2011. Predictors of pain in nursing home residents with dementia: a cross-sectional study. J Clin Nurs 20: 1849–1857. Werner P, Cohen-Mansfield J, Watson V, et al. 1998. Pain in participants of adult day care centers: assessment by different raters. J Pain Symptom Manage 15: 8–17. Weiner D, Peterson B, Ladd K, et al. 1999. Pain in nursing home residents: an exploration of prevalence, staff perspectives and practical aspects of measurement. Clin J Pain 15: 92–101. Zwakhalen S, Koopmans R, Geels P, et al. 2009. The prevalence of pain in nursing home residents with dementia using an observational pain scale. Eur J Pain 13: 89–93.

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