Quality of life of persons with dementia

Abstract

Current research on Alzheimer's disease has been primarily focused on causes and treatment of the disease and on reduction of costs of the burden of care to society. However, considerable emphasis now is placed on person-centered care and the need to enhance the quality of life of people with chronic illnesses and conditions. Alzheimer's disease and related dementias have not been a central part of this discussion despite the lengthy course of the illness which has been described as the disappearance of the person. The purpose of this article is to review the current state of knowledge about quality of life of persons with dementia and to recommend a set of interventions toward enhancing their QoL. Results of the review indicate a set of objective and subjective indicators of QoL with most interventions focused on compensating for losses related to the disease. Based on recent research on personhood and on social exclusion, we propose a framework for creating age-friendly dementia environments. It is based on hypotheses that quality of life can be enhanced through augmenting personal resources and contexts; and that the progression of the illness results in changes in the ‘best fit' between resources and contexts.

Contemporary research on Alzheimer’s disease and related dementias has been focused on reducing the costs of these illnesses to society, to families and to persons with dementia. Escalating growth in numbers of people with Alzheimer’s disease and the economic burden arising from their need for care, have resulted in a sense of urgency about addressing rapidly increasing demands on health systems (1). There is evidence as well of great demands on family members who incur not only social and physical burdens but economic costs resulting from their out of pocket expenses in caring for their relative, their hours of unpaid caregiving work, and their reduced participation in the labour force (2).

Costs to persons with dementia most often are described in terms of loss: economic loss because of lack of employment or out of pocket expenses for needed services (3); loss of memory, cognitive function and emotional connections (4); reduced practical skills and competencies result in compromised autonomy and ability to be meaningful members of society (5). Persons with dementia have been described as feeling estranged from the world (6).

In this article we address our current state of knowledge about quality of life of persons with dementia. Considerable emphasis now is placed on enhancing the quality of life of people with chronic illnesses and conditions (7). Yet despite their prevalence, Alzheimer’s disease and related dementias have not been a central part of this discussion. This may be because of the high value in western societies placed on cognitive capacity and autonomy (8) and the potential for marginalization of those who do not meet these ideals. Given losses with dementia, how do we understand quality of life for persons with these illnesses or indeed whether quality of life is a relevant construct?

In a recent review of approaches to understanding quality of life of older adults, Mollenkopf & Walker (9) described two broad categories of indicators. Objective indicators include standard of living and levels of chronic illness; the depth and breadth of interpersonal relationships with family and friends; and community resources such as public transport, good quality housing and low crime rates. Subjective indicators are based in personal evaluations of life satisfaction, morale or happiness; perceived adequacy of food, financial resources, housing, and family relationships; and hermeneutic approaches that stress feeling valued or fully human.

By virtue of many of these indicators, those with Alzheimer’s disease would have poor quality of life. Their objective resources are limited by their chronic illness, loss of personal relationships and lack of connection to community resources; while their losses can result in low morale and poor self-esteem. There is considerable language that reflects this perspective including dementia as being a slow death, a status of suffering and ultimately, the disappearance of the person (10).

Yet there is renewed interest in moving care beyond a goal of compensating for objective losses toward a more ambitious agenda of enhancing quality of life through emphasizing ‘personhood’ of the individual with dementia and understanding contexts of their lives that may exclude them.

The notion of ‘personhood’ has been proposed in reaction to the marginalization of people with dementia. Bartlett and O’Connor (6) have reviewed this work, noting that personhood is a social construction of the worth of an individual and thus is a status bestowed by others. They argue that people with dementia are stigmatized and marginalized and that the concept of ‘personhood’ has been important in providing language about them as people worthy of respect.

Respect is an essential but not sufficient criterion for improving quality of life. The notion of social exclusion is useful in framing understanding of how lack of access to resources can further marginalize people with dementia. Social exclusion is “the lack or denial of resources, rights, goods and services, and the inability to participate in the normal relationships and activities available to the majority of people in a society” (11, p. 25). Older adults in general are at risk of exclusion from material resources, basic services, social relations, civic activities, and neighbourhoods (12). Those with dementia incur these general age-related risks in addition to others imposed by their illness.

How then is it possible to promote higher quality of life of those who are aging with dementia? We subscribe to the assumption of Davis et al (13, p.187) that the goal is to create a dementia friendly environment, which is “a cohesive system of support that recognises the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way”. In Figure 1 we present a framework for understanding elements of such an environment. It is based on two hypotheses. First, that quality of life can be enhanced through augmenting personal resources (such as functional status or cognitive ability) and through enhancing contextual resources (in built environment care staff, social relations, and neighbourhood/community). Second, that changes throughout the course of the disease result in changes in the ‘best fit’ between resources and contexts.

Figure 1.

Contexts that influence quality of life of persons with dementia

Personal resources are physical and cognitive abilities of the individual. Changes in these resources can have significant impact on the everyday lives of people with AD. For example, in early phases of an illness such as AD, diminished cognitive resources may lead to compromised driving ability and resulting cascading effects on access to services and community engagement (14) and there is increasing interest in interventions to assist older persons and their families with transitions associated with loss of a drivers’ license (15). Research on behavioural interventions such as memory training programs has shown some benefit for those with mild to moderate AD (16). There is less research on later-stage interventions and limited research to date on how interventions to augment

personal resources lead to enhanced quality of life.

The built environment represents the meaning and use of the physical setting in which a person lives. There has been considerable interest in how the living situation of persons with AD (either home or residential care) might enhance or detract from quality of life. There are strong beliefs that a well- designed built environment can enhance independence and autonomy, encourage social interaction and improve way- finding among older adults with dementia (13, 17) . Familiar surroundings also have been shown to reduce symptoms indicative of poor objective quality of life such as delusions, agitation and anxiety and to reduce risk of falls (18). Enhancing the built environment for people at all stages of dementia is a promising area that warrants further collaborative research on the part of designers, architects, social and basic researchers interested in quality of life for persons with dementia. Questions regarding how built environment might influence objective or subjective elements of quality of life across the trajectory of AD have not been addressed systematically.

Social connections are seen as fundamental to quality of life across the lifecycle, providing continuity, sources of everyday support, and potential for care if needed. One of the paradoxes of social support is that it mitigates the impact of functional impairment (19) but may be less available to people with high care needs such as those with dementia (20). Among people with dementia living at home, those with stronger social networks have fewer unmet needs and higher subjective quality of life (21). In residential care settings, regular contact with family and friends is associated with more positive staff resident relationships (22) .

Formal (paid) caregivers may become of central importance in the lives of persons with dementia. Research interest in this context has been on how to enhance quality of life of persons with AD through increasing skills and job satisfaction of care workers. Staff training in understanding of AD and other dementias and provision of individualized care reduces job stress and increases quality of care (23, 24). Nonetheless, there are longstanding but unresolved pressures to keep care standards high but reduce operational costs that can reduce the ability of front-line staff to help maintain quality of life of AD residents.

At the outermost ring of contexts of a person with AD are communities. These are geographic areas proximate to the household of the older person that are important sources of basic services and of opportunities for engagement. There is little research on engagement in community activities of persons with dementia, leaving unanswered the question of whether lack of community involvement is a result of social exclusion or declining personal resources. Relatively little is known about the community connections of people with AD living at home, although there are concerns about their knowledge of and access to health and social services (25) . The recent WHO global age-friendly communities initiative has potential to facilitate participation and contributions of older people (26) though to date there has been no research on community characteristics that might achieve this goal for persons with AD.

The contextual approach used in this article has allowed for a brief examination of our state of knowledge and gaps in research evidence of what might enhance quality of life of persons with dementia. Evidence is growing but still insufficient to support our proposed hypotheses that increasing personal resources or augmenting contexts of persons with AD will lead to better quality of life. Most promise lies in bringing together disciplinary agendas and ideologies toward a systematic approach to building a body of knowledge about the ‘best fit’ between resources and contexts across the course of the illness.