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Family Issues in Behavioral and Psychological Symptoms of Dementia: Unraveling Circular Pathways?

Manuel Gon^alves-Pereira, Maria J. Marques, and Jaime Gracio

I certainly believe we all suffer damage, one way or another. How could we not, except in a world of perfect parents, siblings, neighbors, companions?

And then there is the question on which so much depends, of how we react to the damage: whether we admit it or repress it, and how this affects our dealings with others.

Some admit the damage, and try to mitigate it; some spend their lives trying to help others who are damaged; and there are those whose main concern is to avoid further damage to themselves, at whatever cost.

And those are the ones who are ruthless, and the ones to be careful of.

(The Sense of an Ending, Julian Barnes, 2011)

Abstract Family issues are at the heart of biopsychosocial and systemic approaches to the way we understand and manage dementia. Based on evidence and clinical experience, this chapter revisits the circularities involving behavioral and psychological symptoms of dementia (BPSD) and the family. Negative and positive consequences of the caregiving experience are considered within the particular context of BPSD. We then analyze some of the “appalling dangers of family life” - i.e., negative ways in which family determinants, including expressed emotion, may impact

M. Gongalves-Pereira (*) • M.J. Marques

CEDOC, Chronic Diseases Research Center, Nova Medical School, Faculdade de Ciencias Medicas, Universidade Nova de Lisboa, Campo Martires da Patria 130,

1169-056 Lisboa, Portugal

e-mail: This email address is being protected from spam bots, you need Javascript enabled to view it ; This email address is being protected from spam bots, you need Javascript enabled to view it J. Gracio

CEDOC, Chronic Diseases Research Center, Nova Medical School, Faculdade de Ciencias Medicas, Universidade Nova de Lisboa, Campo Martires da Patria 130,

1169-056 Lisboa, Portugal

Clinica Psiquiatrica de S. Jose, Sisters Hospitallers, Lisboa, Portugal e-mail: This email address is being protected from spam bots, you need Javascript enabled to view it

© Springer International Publishing Switzerland 2017 331

A. Verdelho, M. Gongalves-Pereira (eds.), Neuropsychiatric Symptoms of Cognitive Impairment and Dementia, Neuropsychiatric Symptoms of Neurological Disease, DOI 10.1007/978-3-319-39138-0_15

BPSD. We see that these do not overshadow the family’s role as the most powerful resource throughout the disease. Although further research is needed, both directions of causality ought to be considered in clinical situations: the principle of circularity, as described by the Milan School of Family Therapy, is a heuristic assumption regarding part of the overall BPSD picture. This is discussed at the end of the chapter, together with examples of mediator or modulator variables such as personality and relationship quality, which deserve further exploration.

Keywords Family • Family relations • Caregivers • Carers • Burden • Expressed emotion • Neuropsychiatric symptoms • Dementia • Alzheimer’s disease

Any current review of the topic of BPSD will start by highlighting the growing numbers of people with dementia worldwide, how frequent BPSD are in the context of dementia right from day one, and how they tend to worsen over time. Then, to a variable extent according to country and culture, it must be acknowledged that most persons with dementia live in the community, with extensive support from informal caregivers. Informal care from relatives is the cornerstone of care for people with dementia [1]. In the UK, as in other countries, two thirds of people with dementia live at home, receiving most support from family members [2]. The overall burden associated with providing informal care in physical, emotional, social, and financial terms is also widely recognized. For an updated account of all these aspects, the reader can refer to e.g., the World Alzheimer Report 2015 [3].

Although the negative consequences of dementia caregiving are uncontentious and sentences such as “helping caregivers to care” risk becoming commonplace, two main concerns do arise. First, there is still a gap between this recognition of challenges related to caregiving and the lack of formal clinical and social help that prevails in many care settings. Second, a blind (albeit innocent) focus on caregiver- related interventions may distract us from the first person’s first-hand account of the whole story: perspectives from the person with dementia must be sought and put into context if one wants to understand the meaning underlying some of the behavioral and psychological symptoms of dementia (BPSD) and act effectively. In this chapter we will try to approach BPSD from the perspective of informal family caregivers, but also from that of patients themselves, as members of the family system. Both perspectives are needed in order to understand family issues in BPSD. The term “caregiver” will be used here in the context of informal caregiving mostly provided within the family.

 
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