Dementia Rehabilitation: Evidence-Based Interventions and Clinical Recommendations

By Lee-Fay Low

Rehabilitation helps individuals maintain and optimize independence. Historically, people with dementia have received little rehabilitation and the focus has been on care to replace lost function. Dementia Rehabilitation is a resource for health and social professionals, service planners, policy makers, and academics. The book makes a compelling case for rehabilitation for people with dementia, including the views of people with dementia and the research evidence. For each area of function, the research evidence and relevant theory is summarized, followed by practical information on clinical assessment, and delivery of therapies.

• Identifies rehabilitation as a human right for people with dementia.
• Reviews functions affected by dementia, including cognition, communication, and physical function.
• Outlines evidence-based strategies to maintain function and to delay decline.
• Describes how to maintain activities of daily living and leisure activities.
• Includes techniques to maintain self-identity and mood.
• Recognizes the importance of environment and care partners in supporting rehabilitation.
• Summarizes models of care for rehabilitation.

• Language: English
• Publisher: Academic Press
• Release date: Oct 20, 2020
• ISBN: 9780128186862

Book preview

States

Preface

Lee-Fay Low

Rehabilitation is a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments (World Health Organization, 2011).

A core diagnostic feature of dementia is impairment of function. Ironically, people living with dementia receive very little rehabilitation to achieve and maintain optimum functioning.

People with dementia have been asking for rehabilitation for decades, and lack of rehabilitation is seen as a violation of human rights. In response to its advocacy, national dementia action plans are starting to include provision of rehabilitation as a goal. However, the majority of clinicians and social care professionals working with people with dementia have not entertained the notion that they might benefit from rehabilitation, nor have they received any training on the provision of rehabilitation for people with dementia.

This book is a resource for health and social professionals, service planners, policy makers, and academics bringing together clinical and research knowledge on rehabilitation for people living with dementia. It shows that rehabilitation can improve many aspects of function for people with dementia and provides practical information on delivering rehabilitation. The many gaps in evidence are also articulated, which we hope will stimulate further research.

In Chapter 1, Kate Swaffer opens the book by outlining the arguments that people with dementia have been making for rehabilitation on the grounds of legal, human rights, and personal experience.

Chapters 2–8 focus on different areas of functioning affected by dementia. These have been coauthored by academics and clinicians or clinician-academics and present the current approaches for assessment and intervention with case studies or practical tips to support use in clinical practice. The research evidence, relevant theory, and knowledge gaps are also discussed.

Specifically, in Chapter 2 Bahar-Fuchs, Mowszowski, Lautenschlager, and Cox give an overview of cognitive difficulties in dementia and the impact of cognitive training, cognitive rehabilitation, cognitive stimulation therapy, and physical activity. In Chapter 3, El-Wahsh, Monroe, Kumfor, and Ballard discuss how communication is impacted by dementia and the evidence for word retrieval intervention, script training, memory books, and communication partner training. In Chapter 4, Callisaya, Montero-Odasso, and Hunter explore the decline in physical functioning associated with dementia and pharmacological and non-pharmacological interventions to maintain or improve physical function and prevent falls.

In Chapter 5, Laver, Piersol, and Wiley outline how independence in activities of daily living can be promoted through task modification, environmental adaptation, and working with the person and their care partners. In Chapter 6, O’Connor, Clemson, and Wesson explore promoting leisure activities through task modification, creative therapies, shared activities, and activity prescription. In Chapter 7, Cations, Koder, Blair, and I review how dementia impacts self-identity, friendships and mood, and how to mitigate these through supportive counseling and cognitive behavior therapy and other manualized psychological therapies. In Chapter 8, Scott, Liddle, and Pachana describe supporting people with dementia and their family through giving up driving using strategies such as counseling, education and alternative transport options. In Chapter 9, Evans, Murray, Berndt, and Robertson tackle vocational rehabilitation for workers with dementia and give suggestions on vocational assessment, workplace support, reasonable adjustment, and planned transitions.

Chapters 10–13 cover issues which can facilitate or hinder optimal functioning and delivery of rehabilitation. In Chapter 10, Fleming discusses how architectural aspects, interior and exterior designs, and ambient environment can promote independence and well-being in people with dementia. In Chapter 11, Gitlin and Bruneau Jr. consider the impact of dementia on care partners using the Good Life Model and explore the role of care partners in supporting non-pharmacological interventions through activities, such as exercise, music, art, and pet therapy. Chapter 12 reviews the medical comorbidities in dementia and how these can be managed with a focus on rehabilitation. Finally, in Chapter 13 Jeon, Milne, Kaizik, and Resnick review the evidence, key principles, and elements that contribute to the success of the multicomponent rehabilitation program to improve functional independence for people with dementia.

Please use ideas in this book in your daily work and share them with your colleagues. If you do, please write and let me know how it goes. I’d love to hear about your successes and challenges.

References

World Health Organization. World report on disability. World Health Organization; 2011. Retrieved from: https://www.refworld.org/docid/50854a322.html.

Introduction: Rehabilitation as a new way of working with people with dementia

Lee-Fay Lowa; Kate Laverb, a Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia, b Department of Rehabilitation, Aged and Extended Care, College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia

We are transitioning to a new era relating to how we treat, support, and work with people with dementia as clinicians, service providers, policy makers, and researchers.

I (Lee-Fay) began my career 20 years ago as a home care worker for people with dementia with challenging behaviors, and as a research assistant in a psychogeriatric unit with a drug trials team. In that world people with dementia were clients, patients, and subjects.

My (Kate) first job as an occupational therapy graduate was on an aged care ward at a large hospital. Most of my time was spent assessing and planning for hospital discharge by organizing home supports. Treatment of symptoms of dementia and education of families were not considered to be part of my role.

Our thinking about disease is shaped by culture, professional norms, technological possibilities, and intellectual content (Holstein, 1997). In the 18th century, terms used to describe dementia included amentia, imbecility, morosis, fatuitas, foolishness, stupidity, anoea, simplicity, cams, idiocy, dotage, senility, lethargy, and light-headedness, witlessness (Berrios, 1987). Dementia was originally not defined in terms of cognitive deficit—declines in behavior, personality, and judgment were the symptoms of dementia (Berrios, 1987). In the early 20th century, senile dementia was not distinguishable neuropathologically from normal aging. The discovery of plaques and tangles in Alzheimer’s disease suggested a disease entity distinct from senile dementia for which there was potential for cure (Holstein, 1997). This has driven the exponential increase over the last 40 years in dementia research, mostly driven around the concept of Alzheimer’s disease as a clinicopathological entity (Boller & Forbes, 1998). In the last 10 years, voices of people with dementia have started to influence our conceptualization of dementia, championing the notion of dementia as a disability, and that people with dementia have human rights to treatment including rehabilitation (see Chapter 2). Some researchers are also starting to think about dementia as partly being a social disease (Vernooij-Dassen & Jeon, 2016).

The lens or frame through which the problem of dementia is viewed has consequences for how the treatment and care of people with dementia is approached (Knifton & Yates, 2019). If problematized as a natural consequence of aging, then we need to prevent aging.; a mental disorder lens may focus on managing behavior and mood, a biomedical disease requires pharmacological treatments, a neurocognitive disorder implies brain treatment and cognitive training, a terminal illness suggests a palliation approach, and as a disability and social disease leads to work in community inclusion and social participation (Knifton & Yates, 2019).

Today, we both work within interdisciplinary research groups with psychology, occupational therapy, physical activity, medical, sociology, anthropology, social marketing, policy, and health systems expertise. People with dementia are our collaborators, colleagues, and friends. While a curative treatment and prevention are eminently desirable, our work relates to supporting people with dementia to live good lives according to their own meaning of good. One part of having a good life is to receive rehabilitation—i.e., therapies which address their symptoms of dementia and services which support them to be active and participate in their usual roles and communities (Dementia Australia, 2019). They also want to be involved as collaborators on initiatives that promote independence (Dementia Australia, 2019).

During the development of this book, we (the editors) have had many discussions with each other and with our peers about whether we should use the term rehabilitation when describing treatments for people with dementia. Alternative terms that are often used when discussing programs that aim to optimize independence and well-being in older people include reablement, restorative care, and reactivation. Such terms seem to be particularly popular with policy makers and service providers in countries such as the United Kingdom, the United States, and Australia. Our decision to use the term rehabilitation aligns with the terminology used by the World Health Organization when describing interventions for people with chronic conditions that optimize functioning and reduce disability in individuals with health conditions in interaction with their environment (World Health Organization, 2011). The World Health Organization’s global action plan in response to dementia (2017–25) specifically calls for member states to develop pathways of efficient and coordinated care that include rehabilitation (World Health Organization, 2017).

The broad definition of rehabilitation means that it is an inclusive intervention approach; it applies to people with a range of different disabilities, at different times in their illness, and in different settings. The World Health Organization describes how rehabilitation may be needed by anyone with a health condition and difficulties in mobility, vision, hearing, speech, swallow, or cognition (World Health Organization, 2011). This applies to people with dementia who are likely to experience most of these symptoms over the course of the condition. Rehabilitation addresses impairments, activity limitations, and participation restrictions, as well as personal and environmental factors (including assistive technology) that impairs functioning. In contrast, terms such as reablement and restorative care usually refer to one-off short-term programs provided for community-dwelling older people (Sims-Gould, Tong, Wallis-Mayer, & Ashe, 2017).

The field of rehabilitation is relatively young; however, recognition of its importance is growing. People are living longer with disabilities and surviving significant trauma. Medical models of care, particularly acute models of care, do not address the functional consequences of illness or disease. Rehabilitation is a person- and/or family-centered process, with interventions focused on optimizing function and capacity. Evidence from research studies is accumulating and there is now good evidence supporting multidisciplinary rehabilitation programs for people with conditions such as hip fracture (Cameron, 2010) and stroke (Langhorne, Bernhardt, & Kwakkel, 2011).

In the field of dementia care, there is little evidence for programs which are described by research teams as being rehabilitation interventions. However, there is good evidence for interventions such as occupational therapy, exercise programs, psychological therapy, and working with families to optimize independence. We have worked with experts to gather this evidence for this book.

We believe that this book outlines evidence that rehabilitative interventions are possible and efficacious for people with dementia. Our aim is that this evidence will contribute to combating therapeutic nihilism that nothing can be done for people with dementia, and to convincing clinicians, service providers, and policy makers to start delivering rehabilitative interventions that support people with dementia to function optimally and reduce their disability.

References

Berrios G.E. Dementia during the seventeenth and eighteenth centuries: a conceptual history. Psychological Medicine. 1987;17(04):829. doi:10.1017/s0033291700000623.

Boller F., Forbes M.M. History of dementia and dementia in history: An overview. Journal of the Neurological Sciences. 1998;158(2):125–133. doi:10.1016/s0022-510x(98)00128-2.

Cameron I.D. Models of rehabilitation–commonalities of interventions that work and of those that do not. Disability and Rehabilitation. 2010;32(12):1051–1058.

Dementia Australia. Our solution: Quality care for people living with dementia. Canberra: Dementia Australia; 2019. Retrieved from https://www.dementia.org.au/sites/default/files/documents/DA-Consumer-Summit-Communique.pdf.

Holstein M. Alzheimer's disease and senile dementia, 1885–1920: An interpretive history of disease negotiation. Journal of Aging Studies. 1997;11(1):1–13. doi:10.1016/s0890-4065(97)90008-6.

Knifton C., Yates S. A ‘history of problematizations’ for dementia education: A Foucauldian approach to understanding the framing of dementia. Journal of Research in Nursing. 2019;24:212–230. doi:10.1177/1744987119831737.

Langhorne P., Bernhardt J., Kwakkel G. Stroke rehabilitation. The Lancet. 2011;377(9778):1693–1702.

Sims-Gould J., Tong C.E., Wallis-Mayer L., Ashe M.C. Reablement, reactivation, rehabilitation and restorative interventions with older adults in receipt of home care: a systematic review. Journal of the American Medical Directors Association. 2017;18(8):653–663.

Vernooij-Dassen M., Jeon Y.-H. Social health and dementia: the power of human capabilities. International Psychogeriatrics. 2016;28(5):701–703. doi:10.1017/S1041610216000260.

World Health Organization. World report on disability. Retrieved from https://www.refworld.org/docid/50854a322.html. 2011.

World Health Organization. Global action plan on the public health response to dementia 2017 - 2025. Geneva: World Health Organization; 2017. Retrieved from https://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/.

Chapter 1: Rehabilitation: A human right for everyone

Kate Swaffer    School of Nursing, University of Wollongong, Wollongong, NSW, Australia

Abstract

From the perspective of people with dementia, this chapter explains why an increasing number of people with dementia have advocated for the need for rehabilitation following a diagnosis. Dementia is a disability and rehabilitation is our legal and human right as part of postdiagnostic services and support. Rehabilitation for the symptoms of dementia is supported by good evidence and is a logical demand, which health-care professionals appear to be ignorant of or ignore. This chapter shares personal stories about the challenges faced by people with dementia, the rehabilitation some have managed to arrange and benefits in terms of quality of life, well-being, and possible slowing of dementia. This chapter highlights the importance of implementing rights into policy and practice for dementia. It offers insights into why people with dementia must be seen and accorded the same rights as all others living with any other acquired disabilities.

Keywords

Disability; Stigma; Rehabilitation; Prescribed disengagement; Human rights; Legal rights; Dementia

I keep the patients alive. Rehabilitation gives them Quality of Life.

(Dr. Tagio Tumas, Ministry of Health, Rehabilitation 2030 Forum, Geneva, July 2019).

Dementia is an acquired disability

The World Health Organization (WHO) and Alzheimer’s Disease International (ADI) declared dementia a global public health priority in 2015 (World Health Organisation, 2015). There are more than 50 million people living with dementia, nearly 10 million cases are diagnosed every year, with a new diagnosis every 3.2 s. Dementia is the fifth leading cause of death globally, and a major cause of disability and dependence in older persons (World Health Organisation, 2019).

Dementia is a progressive and chronic neurodegenerative disorder, characterized by cognitive and functional impairments, including changes to long- and short-term memory recall, reasoning, planning, language, perception, and activities of daily living. It is a terminal condition, which often spans many years from diagnosis to death.

Dementia is also a condition causing disability, i.e., a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions, or participate in typical daily activities and interactions, or an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment (Miriam-Webster, 2020).

This book on rehabilitation for those living with dementia is timely. There has been increasing pressure to recognize the human and legal rights of people living with dementia due largely to the activism of our representative organizations and allies (Dementia Alliance International, 2016; Swaffer, 2015a, 2015b, 2015c, 2018a, 2018b). Dementia was included in the United Nations Report of the Special Rapporteur on the rights of persons with disabilities (Devandas-Aguilar, 2019), which identified human rights concerns faced by both people with disabilities who are aging and older persons who acquire a disability.

Researchers and health professionals have been slow to consider or describe dementia as a disability (Thomas & Milligan, 2018). There has also been a lack of recognition about the importance of rehabilitation for people with dementia (Cations et al., 2019), with the result being that people with dementia are still not offered disability assessment and support, and may be denied rehabilitation.

To elevate the experience and quality of life of people living with dementia, it is important to manage the symptoms of all dementias as acquired disabilities, at the time of diagnosis, and to provide post diagnostic assessment and support for disabilities, including rehabilitation immediately after diagnosis.

If we manage the symptoms as cognitive and other disabilities, rather than only equating dementia to memory loss, which supports the myths and stigma around dementia, then the fear and discrimination may decrease. Symptoms of dementia are not only changes to memory, and many with younger onset dementia report they have few changes to memory when first diagnosed. People with dementia experience many disabilities including aphasia and other language and communication disabilities, acquired dyslexia, spatial and depth perception changes, sensory changes to taste and smell, and many others.

Perhaps most importantly, reframing dementia as a disability reinforces the rights for people with dementia as described in the UN Convention on the Rights of Persons with Disabilities (CRPD; see below for details). These are the standards every human being is entitled to and include the right to the highest attainable standard of universal health coverage with respect to a diagnosis, to its ethical disclosure, to access to rehabilitation services, and to postdiagnostic services including non-pharmacological supports. People with dementia have the same legal rights as others throughout all stages of their life. These legal rights are inviolable and can never be removed no matter how advanced the dementia.

For decades, our human rights, and our legal rights have been ignored, and continue to be breached daily.

The benefits of reframing dementia as a disability

Reframing dementia as a disability will move our approach away from the medical model of care to one that is based on a social and disability pathway of support and care. The UN Convention on the Rights on Persons with Disabilities (CRPD) rejects the medical model, and its treatment of persons with disabilities as objects of charity and social protection. It instead embodies a view of all disabled persons as subjects with human and legal rights, who should be able to claim their rights as active citizens (Korolkova & Anthony, 2016). For example, Article 26 of the CRPD states that: States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.

The pathologization of dementia has led to expressions of suffering and defiance toward one’s circumstances (Boyle, 2008). This is particularly harmful in a human rights context as behavior should be valued as expressions of one’s will and choices but instead is perceived as symptoms caused by the pathology of dementia. These behaviors are commonly referred to as behavioral and psychological symptoms of dementia (BPSD), and in this context, challenging behaviors or BPSD are assumed to be a result of dementia, and lack of insight rather than being seen as an adaptive response to the environments’ (Evans et al., 2016; Wigg, 2010) or as normal human responses to changes including unmet needs (Barnsness et al., 2018). This pathologization results in a denial of will and choice, and therefore of human rights. Dementia is not a mental health condition, nor is it an intellectual disability or a psychosocial disability. The symptoms caused by dementia are now recognized as cognitive disabilities.

Conceptualizing dementia as a disability also moves us away from the welfare and charity approach, which has been widely criticized for being paternalistic and failing to encourage independence, social integration and participation in the life of the community (Power, Lord, & Defranco, 2009). Welfare approaches traditionally focused on providing institutional forms of care to persons with disabilities which kept them in a state of dependency, rather than providing them with support and enabling their participation in society. This is currently the case for people with dementia.

Classifying dementia as a disability forces greater consideration of the human and legal rights of people with dementia. Traditional approaches have excluded us from engaging in decision-making about our personal affairs, health needs, and from society more generally (Kayess & French, 2008). The CRPD moves our approach toward a human and legal rights framework, recognizing an extensive obligation of governments to provide support in achieving full equality of rights for all persons with disabilities (Kayess & French,