CHAPTER 14 Advanced dementia
When you have completed this chapter you will be able to:
INTRODUCTION
Dementia is an increasingly burdensome health issue as it is a progressive, incurable disorder severely limiting an individual’s functional ability and quality of life (Alzheimer Australia, 2006), and ranks as the third leading cause of death for Australian females among the population aged 18 years and over (Australian Bureau of Statistics, 2007). In the Asia–Pacific region the number of people with dementia is growing. In 2006, it was estimated that 210,000 Australians had a confirmed diagnosis of dementia, with a further 54,000 newly diagnosed cases estimated (Alzheimer Australia, 2006). Almost two-thirds of the people with dementia are aged over 80 years (Access Economics, 2005). In New Zealand, in 2007 there were over 32,000 people with dementia (Alzheimer’s Association of New Zealand, 2007). Symptoms of advanced dementia can resemble those of advanced cancer, often necessitating institutional care. Yet dementia patients rarely receive the palliative care accorded to patients with a terminal illness, so their needs are likely to be unmet. Therefore, the symptoms of dementia are likely to present as a challenge for professional carers.
ADOPTING A HOLISTIC APPROACH
The pathology of dementia means that many challenges and disruptions occur along the illness trajectory, manifesting as a multitude of symptoms affecting the mind, body and spirit of the person (Maher & Hemming, 2005). The challenge faced by nurses is to provide high-quality care that takes into account the mind, body and spirit in a person who is deteriorating physically and experiencing increasing impairment of their cognitive and communicative abilities (Jenkins & Price, 1996). This leads to a care environment in which the nurse’s practice is complex and multi-layered, as a direct consequence of dementia pathology. The basic principle of care is to meet the needs of the person by managing their total symptom experience rather than responding to discrete segments, for example attending to a person’s emotional status while also assessing their pain (Maher & Hemming, 2005).
The illness trajectory of dementia is frequently slow and insidious, with family often acting as the primary caregivers for substantial periods of time. Ultimately, for the majority of people with dementia, a move to institutional care in a residential aged care facility (RACF) is required (Nugent, 2005). The long involvement of family carers is unique to this client group; nurses, as part of their holistic approach and principle of care, must include the family in their caregiving. Recognising how family are feeling has a direct impact on the person with dementia (Nugent, 2005) and may further contribute to their anxiety, depression, wandering and other displays of behaviour. It is through the relationships the nurse has with the person and their family and the actions the nurse demonstrates in providing holistic care that healing occurs. Healing in this context means seeing the person as a whole, attending to all dimensions of care, giving meaning to their life, offering hope to the family, and showing compassion, respect and patience. It is from this understanding that nurses can make a difference to the lives of the person affected by dementia and their family. Holistic nursing therefore delivers nursing care that addresses the person’s physical, intellectual, emotional and spiritual dimensions. The person and their family’s needs are considered as an interrelated entity of these dimensions (Taylor, 2005). If holistic nursing is not undertaken, significant levels of distress and suffering may be experienced by the person and their family (Maher & Hemming, 2005).
When nurses believe and demonstrate through their actions that they view a person as a whole human being embracing the interconnectedness of mind, body and spirit, evidence of a holistic approach to the delivery of nursing care is present (Erickson, 2007; Nugent, 2005). Erickson (2007) sees a person’s wholeness as the dynamic interaction of the mind, body and spirit components within the person, between and among others and with the universe (p. 140). For a healthy state to exist, balance and harmony in all aspects of the person’s life—physical, social, emotional, cognitive and spiritual—must be present, irrespective of the presence or absence of physical disease (Erickson, 2007). This implies that in the presence of disease, a person has the potential to achieve a state of wellbeing if their needs are addressed holistically and the person remains in a relational context with other people (Erickson, 2007). In these circumstances, the person seeks, in partnership with the nurse, to ameliorate the imbalance and disharmony present through the alleviation of suffering, promotion of comfort, finding inner peace, assisting with healing and preventing illness and injury (Erickson, 2007; Mariano, 2007). Practising in this way demonstrates a shift in care from being disease-oriented to embracing the needs of the person and their family (Erickson, 2007; O’Brien et al, 2007).
The following principles underpin holistic nursing: understanding the person as a unique human being who possesses a connectedness with everyone and everything; recognising the need for healing in states of illness where cure is not possible but where management of symptoms will lead to the alleviation of suffering; promoting comfort and restoration of balance and harmony; engaging in care practices that embrace both the science and the art of nursing; performing nursing care in relationship with the person and their family based on the values of compassion, respect, trust, authenticity; and participating in self-care activities to promote healing and personal development of self (Mariano, 2007; Nugent, 2005).
When a holistic approach to care is adopted, the journey taken by both the nurse and the patient is of a healing nature. This journey is predicated on the notion that healing is reflective of the following: having a presence; intent; unconditional acceptance; love and compassion (Erickson, 2007, pp. 154–9). Healing leads to the attainment of wellbeing in the presence of disease for the patient and, for the nurse, provides an energy source derived from the balance and harmony achieved that nurtures the nurse to continue caregiving. Understanding where the person and their family are at is the beginning point of the journey for the nurse, the person with dementia and their family members (Mariano, 2007).
Assessment of the person and their family’s needs, at this point, offers the opportunity to identify and discuss care options across the illness trajectory in the context of the person’s preferences (Mariano, 2007). Understanding the personal characteristics of the individual allows for the tailoring of interventions to support the person’s deficits, to maximise their strengths and to identify the coping mechanisms of the person and their family (Kolanowski & Whall, 2000, p. 74) in the management of end-of-life issues.
Holistic nursing therefore offers nurses a means of practice that responds to the whole person by addressing their physical, psychological, social, spiritual and cultural needs as a collective entity rather than directing care to discrete segments of a disease (Erickson, 2007; Maher and Hemming, 2005; Nugent, 2005). For example, a person with dementia may scream or lash out as a result of feelings of anxiety, fear or depression due to their incapacity to express themselves and not as a consequence of dementia pathology (Kolanowski & Whall, 2000, p. 69). Alternatively, in the presence of non-assessed or misdiagnosed fatigue, thirst, hunger and/or pain, a person with dementia may respond by wandering, physical aggression and disruptive vocalisations (Kolanowski & Whall, 2000, p. 70) or exacerbations of these behaviours in response to an unmet physiological need.
Nurses who engage in a holistic nursing approach use a repertoire of actions that demonstrate their commitment to the concept of holism, including touch, massage, eye contact, moderated and empathic voice, comfort measures, aromatherapies, exercise, music, active listening, creation of trusting relationships, an approach that is non-confrontational and calm and the sensitive eliciting of information (Erickson, 2007; Maher and Hemming, 2005; Nugent, 2005; Kolanowski & Whall, 2000).
In case study 14.2 Bill South doesn’t recognise his children anymore. In this situation the nurse can use holistic nursing care to support both the individual and their family on the actual losses they are experiencing.
ADVANCED DEMENTIA AND THE EXPERIENCE OF PAIN
Pain is a subjective experience as illustrated in the definition by McCaffrey (1968), which is still commonly used today: ‘Pain is whatever the experiencing person says it is, existing whenever he or she says it does’. The challenge for the nurse, then, is how to assess and manage pain in people with advanced dementia who cannot usually verbally communicate how they feel, due to the disease processes involved. Another challenge is that people with dementia do not follow a linear trajectory towards death, and as a result pain management can be variable (Aupperle et al, 2004). In addition, an observable behaviour symptom (e.g. agitation) may be symptomatic of conditions other than pain, highlighting the complexities in symptom management in people with advanced dementia. However, significant pain is a common experience in advanced dementia (Aminoff & Adunsky, 2004; Black et al, 2006; Feldt et al, 1998; Ferrell et al, 1995; McClean, 2000; Parmelee, 1996; Won et al, 2004; Young, 2001). As stated in the Australian Guidelines for a Palliative Approach in Residential Aged Care (Commonwealth Department of Health and Ageing, 2006), ‘One of the most difficult aspects for the aged care team who is caring for the resident with advanced dementia is assessing whether they are experiencing pain’ (p. 62). Clinical experience of the authors supports this finding, with many Australian aged care nursing clinicians stating that the ability to not only assess but also address pain issues for the cognitively impaired resident remains a constant issue of concern as clinicians struggle to function within a system not designed or educated to cope with this challenge.
The literature indicates that people with dementia are at high risk for unrecognised, untreated or under-treated pain (Black et al, 2006; Evans, 2002; Shega et al, 2006; Snow & Shuster, 2006). Apart from the challenges in assessment described above, this situation may be partly due to a common perception among many in our community, as well as trained health professionals, that individuals with dementia do not experience pain because of their impaired cognitive state (Boller et al, 2002) and their inability to verbalise and self-report their pain. This is not a logical assumption, because although communication deficits and motivational and complex thinking impairments may blunt pain behaviour, they do not necessarily alter pain perception (Schuster, 2000). Even towards the end of life such individuals continue to interact with their environment and are not in a vegetative state (Boller et al, 2002; Volicer & Hurley, 1998).
The majority of people with advanced dementia are over the age of 65 (Gow & Gilhooly, 2003), and as such are likely to have underlying medical conditions that can cause pain (McClean, 2000). In advanced dementia, pain is frequently the result of constipation or diarrhoea, lodged food particles, contractures, bed sores or urosepsis (Smith, 1998, p. 247).
For people with advanced dementia, pain may be expressed in terms of irritability, increased confusion or resistance to care. Nursing staff are in an ideal position to be able to notice changes in function or behaviour that may be signs of pain, as they are so closely involved in the care of the person that only they may be able to interpret the meaning of the symptoms. They also have an ethical and legal obligation to make all attempts to ensure the comfort and pain management of their patients, especially for those who are unable to express their pain verbally (Kerr & Chenoweth, 2003).
ASSESSING PAIN IN PEOPLE WITH ADVANCED DEMENTIA
An expert-based consensus statement of pain assessment in older adults recommended that adequate assessment is vital in providing a basis for clinical decision-making and optimal care (Hadjistravropoulos et al, 2007). One of the main reasons that pain management in patients who are older and cognitively impaired is inadequate is that there is a lack of or inappropriate assessment (Hadjistravropoulos et al, 2007). A systematic approach is required, using all members of the caring team within the facility, including family members.
Experts recommend that best practice for this population is to utilise behavioural observation-based assessment, due to difficulties with recall, interpretation of sensations and verbal expression in dementia (AGS Panel on Persistent Pain in Older Persons, 2002; American Medical Directors Association, 2005, Commonwealth Department of Health and Ageing 2006). Thus nursing staff base their decisions on an objective assessment of pain relief needs rather than simply relying on subjective impressions. An attempt should always be made to obtain a self-report of pain from the person with advanced dementia, before changing to behavioural observation (Snow & Shuster, 2006), because ‘any reports of pain from the cognitively impaired resident should be accepted as just as valid and reliable as those of residents who can communicate’ (Australian Pain Society, 2005). Kerr and Chenoweth (2003) recommend the following interviewing skills when assessing pain in people with cognitive impairment: ask simple and specific questions about how the person is feeling (e.g. ‘Do you have an ache?’); speak calmly and at a pace the person can comprehend; adopt a caring and patient manner; maintain eye contact and keep checking that the person understands the question; and use a safe, quiet environment. However, the nurse should also remember that, if the person’s self-report of pain is negative, and pain discomfort behaviours are present, pain is likely (Snow & Shuster, 2006). A family carer report is also recommended if one is available, as they are familiar with the person’s usual demeanour (Kerr & Chenoweth, 2003).
The medical history should also be reviewed, especially in relation to factors and conditions known to be associated with pain. Additionally, it is useful to know the history of the pain being experienced itself. Useful questions include ‘When did the pain start?’; ‘What aggravates the pain?’; ‘What relieves the pain?’ and ‘Is there a certain time of the day when the pain is present?’ While a resident with advanced dementia may not be able to recall and respond to these questions, family members and other members of the care team may be able to assist.
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