Differences in Pain Management
For many years, there have been consistent reports of inadequate pain management in almost all populations. This has led to several initiatives from both professional organizations and politics in different countries to improve this situation. Examples are “The European Year against Pain” and “Decade of Pain Control and Research”1. Within the people with pain, several subgroups, including racial/ethnic minorities, have even a much higher prevalence of inadequate pain management . What are the reasons for this inequity?
When pain ratings are compared between physicians and patients, physician ratings typically underestimate the individual report. This underestimation is however much larger for minorities like African Americans as patients, compared to non-African Americans. This is reflected in the prescription of analgesics, with Hispanic and African Americans being two to three times as likely as Whites not receiving any pain medication . Interestingly, this difference is not accounted for by pain severity or other patient characteristics. Although later studies suggest the difference in analgesic prescription has become smaller, they do seem to persist in the prescription of opioids, with African American, Latino, and Asian Americans receiving less opioid prescriptions and lower opioid dosages. This has been found in perioperative pain, chronic nonmalignant pain and cancer pain, and both in children and adults .
Negative attitudes of physicians toward racial/ethnic minorities and prejudicial racial stereotyping probably play an important role in the explanation of the poorer pain management in ethnic minorities. This is a process that is often not intentional or conscious (based on explicit values) but rather associative and automatic (based on implicit values) .
Limited cultural competence of health-care workers has been suggested as an additional factor in sustaining the inequities in pain management in ethnic minorities. “Care delivery in a manner that is respectful of and sensitive to the patients (cultural) background and health beliefs” is the definition of cultural competence. It is needless to say that this has unfortunately not been the focus of medical schools, at least not in the past .
CULTURE AND DEMENTIA
If one wants to understand the cultural aspects of pain in dementia, it is necessary to introduce the cultural aspects of dementia and dementia care. Differences have been noted between populations in relation to perceptions, responses, and practices toward dementia. Most of this knowledge has been generated by studies that applied a focus on ethnicity, and despite the criticisms the concept of ethnicity has received, it has nevertheless produced some useful insights. This showed the specific meanings attributed to dementia by different ethnic groups, depending on whether the condition is understood as part of normal aging or whether it is seen as a mental illness and carrying stigma . Diverse ways of caring for people with dementia have been identified in different ethnic minority groups. The study by Adamson and Donovan, for example, showed different reasons for considering caregiving as a valued and self-evident practice in two ethnic groups . Among the South Asian sample this was related to cultural and religious views while for the African and Caribbean participants this was related to expectations for caregiving within the family and determined by more secular considerations. Such findings can point toward disparities between different populations regarding the estimated need for services. The finding that caregiving is often taken for granted by members of the extended family in ethnic minority groups does not mean that they prefer to “look after their own” and do not need support. Ethnic groups with strong filial piety (the feeling of obligation to provide care for older family members) may not be inclined to look for formal care options or they may even not be aware about services despite having high needs for support with caregiving .
These findings documenting differences between racial or ethnic groups and the resulting disparities regarding care reinforce the view of culture as ethnicity. Ethnicity is different from race (as explained above). Differences in ideas about dementia, perceptions regarding pain, and care needs are much more complex than just coinciding with different groups of people.
The idea of “cultural competence” in educational programs has been a response to the health professionals’ wish to provide appropriate care, which aims at taking “cultural” differences into account . Cultural competence refers to groups of people with homogeneous characteristics and clearly distinguishable boundaries. Such an approach provides clinicians with a well-delineated body of knowledge which they are required to become competent in. General knowledge about differences in understandings or care practices is undoubtedly useful. However, the attempt to classify ethnic beliefs and practices under the label of “culture”—also referred to as the “fact file” or “cookbook” approach—risks reinforcing stereotypes it purports to overcome [17, 25]. This entails the risk of reifying culture, and concretizing “it” as a thing whereby it is attributed an existence as an entity (for example, that it is a group that someone can belong to) or as a causal agent, (where a certain culture leads its members to undertake specific actions) which it cannot .
That inquiry into cultural issues has not been further developed in dementia research is related to the view that people with dementia were considered incapable of contributing to research , and only recently their views are elicited in research to get insight into their experiences of the illness, or their symptoms, such as pain to inform about their care needs . Research has almost exclusively attended to what dementia is and how it needs to be perceived, rather than its lived experience. Those who typically raise their voice have middle-class backgrounds, are well educated, with early-stage dementia, have a supportive family, and have strong views about the way people with dementia are represented. Less is known about people from other backgrounds, such as ethnic minorities.
THE CULTURAL DIFFERENCES IN CARE SETTINGS
In the trajectory of dementia, the individual and his family gradually is involved with many different health-care workers, in many settings. Because of the complexity of the disease, pain is seldom the first priority.
Usually, the first complaints of cognitive (memory) impairment are discussed in primary care, with the family physician. Although, remarkably, often patients with minimal cognitive impairment or early stage dementia do not particularly complain of memory deficits, close family and friends are often very concerned of this deficit. Priorities are mostly on diagnosis, trials of treatment, for instance with acetylcholine inhibitors and getting help and home care in place. In the course of dementia a huge amount of disabling physical, behavioral, and psychiatric problems arise, and in many cases some form of long-term care is eventually needed. In this process, several visits to the emergency room usually take place, for instance, for the results of a fall like hip or wrist fracture. In the end, the patient is in need of palliative care.
What are some characteristics of these care settings that influence pain management in dementia?
Most people with dementia live at home and their family are providing most of their care . The experiences and burden of care by informal carers are well explored in the literature. Disabling pain and other symptoms have a major impact on independence and people’s quality of life . Where specialist palliative programs are less common in home settings, symptoms and pain are not recognized and are left untreated . Home care traditionally has low status and the care workers who are employed in home care are generally not well trained, have little supervision, receive low wages, and get little recognition for their work. In general, the assessment of pain is at the most only asking the patient “are you in pain?” In people with dementia, this is certainly not adequate.
As home care workers are increasingly caring for the oldest old, their work is changing from providing domestic help to more personal care and specialized nursing activities . The close contact of these frontline workers with people with dementia and their informal carers as well as families requires additional training and supervision. As they have to interact with people who have communication problems and cognitive impairment they need to be aware of ways of interpreting behavior as a mode of expression. These care workers could fulfill a key role in the identification, assessment, and management of symptoms that compromise patients’ daily quality of life. Research and policy have so far paid little attention to this group of care workers . The challenges and dynamics of this workforce in relation to their supervisors, the people they care for and the circumstances in which they work need to be studied in order to change the culture of home care for older people with dementia and more adequately address complex problems such as pain in dementia.
As a response to the increasing care needs which are presented by aging societies, many governments are restructuring their care systems by shifting the emphasis away from care in institutional settings toward home-based services . Home is often also the preferred place of care and death for most people [16, 63]. However, a European study showed that a home death for people with dementia only occurred in a minority of cases (ranging from 3.3% in Wales to 16.4% in Belgium) . Although home as the place to receive care at the end of life was still uncertain in Belgium, continued primary care and paid home care or specialist palliative home care were responsible for preventing transitions to the hospital [45, 54]. Home death is more common in the USA , where hospice programs are operating in the community. Specialist palliative care support was shown to enhance the chances of dying in a home environment . In Germany, 42% of patients with dementia died at home. Although, it was the preferred place of death by both patients and family, a high symptom burden was reported in the last 2 days of life. Family members were generally more satisfied with the care provided at home, than in the hospital or nursing home .
Good home health care at the end of life in dementia requires improving informational strategies, care organization, symptom monitoring and treatment, and support for surviving relatives .
Acute Care: “No Time to Waste”
The emergency hospital setting is a very confusing place for a person with dementia. There are a lot of sounds, people walking in and out, and generally staff is focused on getting the right diagnosis as soon as possible, and making decisions on when and how and where to give curative treatment. Staff is generally extensively trained in traumatology, acute internal medicine, stroke management, with little or no training in geriatrics or psychiatry. In this setting, staff is not likely to pick up signals, such as agitated behavior or facial expressions of pain in dementia. This is how we can explain that people with dementia and a hip fracture receive less opioids before and after their surgery .
Long-Term Care: “We Are So Busy”
People with dementia are most likely to need institutional care at one point . People with dementia impose a greater burden of care than people with somatic conditions [18, 61]. In the course of their illness, a change in their situation or a crisis will trigger their admission to a nursing home, although this is not always the wish of people with a diagnosis of dementia or the people caring for them . It is estimated that about one third of people with dementia live in long-term care settings and this number increases with age .