Neurocognitive Impairment: Addressing Couple and Family Challenges

• Published date: 01 December 2017
• DOI: http://doi.org/10.1111/famp.12316
• Author: John S. Rolland
• Date: 01 December 2017

Neurocognitive Impairment: Addressing Couple and

Family Challenges

JOHN S. ROLLAND*

Conditions involving neurocognitive impairment pose enormous challenges to couples

and families. However, research and practice tend to focus narrowly on immed iate issues

for individual caregivers and their dyadic relationship with the affected member. A broad

family systems approach with attention to family processes over time is needed in training,

practice, and research. In this paper, Rolland’s Family Systems Illness model provides a

guiding framework to consider the interaction of different psychosocial types of neurocogni-

tive conditions and their evolution over time with individual, couple, and family life-course

development. Discussion addresses key family and couple issues with mild-to-severe cogni-

tive impairment and progressive dementias, including: communication, multigenerational

legacies, threatened future neurocognitive disability, ambiguous loss, decisional capacity,

reaching limits, placement decisions, issues for adult children and spousal caregivers, and

the transformation of intimate bonds. Principles and guidelines are offered to help couples

and families master complex challenges, deepen bonds, and forge positive pathways ahead.

Keywords: Neurocognitive Impairment; Dementia; Family Caregivers; Biopsychosocial

Fam Proc 56:799–818, 2017

Conditions involving neurocognitive impairment, such as dementia and traumatic

brain injury, present heart-wrenching challenges for individuals and their loved ones.

Because these conditions alter the capacities for relational connection in varied ways, they

can profoundly affect couple bonds and family life (Ablitt, Jones, & Muers, 2009). Health

care of dementias is among the costliest chronic disorders (Hurd, Martorell, Delavande,

Mullen, & Langa, 2013). Low-income and minority families are particularly at risk

because of cumulative lifetime stress, health-care disparities, and lack of quality afford-

able care (Zuelsdorff et al., 2017). The greater health and mental health morbidity for

dementia caregivers, relative to other chronic conditions, is well documented (Alzheimer’s

Association, 2015; Dassel, Carr, & Vitaliano, 2015), especially for those with chronic

health concerns themselves (Schulz & Beach, 1999). The high intensity and longer dura-

tion of caregiving demands are major factors (Kasper, Freedman, & Spillman, 2016).

An extensive literature on dementia caregiving and effective multicomponent interven-

tions focuses on the primary caregiver(s) (Belle et al., 2006; Mittelman, 2013; Zarit & Tal-

ley, 2013) and on reductions in caregiver depression and anxiety (Joling, van Marwijk,

Smit, van der Horst, & Scheltens, 2012; Mittelman, Brodaty, Wallen, & Burns, 2008).

However, approaches tend to focus narrowly on individual caregivers and their dyadic

relationship with the neurocognitively affected member. The broader relational impact for

couples and families is considerable and is well documented (Fisher & Lieberman, 1994).

To read this article in Simplified Chinese and Spanish, please see the article’s Supporting Information on

Wiley Online Library (wileyonlinelibrary.com/journal/famp).

*Department of Psychiatry and Behavioral Science, Northwestern University Feinberg School of Medicine, and

Chicago Center for Family Health, Chicago, IL.

Correspondence concerning this article should be addressed to John S. Rolland, Chicago Center for

Family Health, 20 N. Wacker Drive, # 1442, Chicago IL 60606. E-mail: john.rolland@northwestern.edu.

799

Family Process, Vol. 56, No. 4, 2017 ©2017 Family Process Institute

doi: 10.1111/famp.12316

Despite the expanded use of family therapy with dementia (Benbow & Sharman, 2014;

Boss, 2011), a broad family systems approach with attention to family processes over time

is vastly underutilized.

Using the Family Systems Illness (FSI) model as a guiding framework, this study

addresses some key family and couple challenges when a member has mild-to-severe cogni-

tive impairment and progressive dementias. Issues include communication, ambiguous

loss, decisional capacity, placement decisions, and life-cycle challenges (e.g., adult children

with aging parents). Core issues are highlighted for couples, such as intimate bonds,sexual-

ity, and revisioning hopes and dreams. Guidelines are provided to help couples and families

master these complex challenges, deepen bonds, and forge positive pathways ahead. Issues

involving intellectual and developmental disabilities are beyond the scope of this paper.

FAMILY SYSTEMS IN HEALTH CARE

Over the past four decades, family-centered, collaborative, biopsychosocial models of

health care have grown and evolved (McDaniel, Doherty, & Hepworth, 2014; Peek, 2015;

Rolland, 1994, in press; Wood, Lim, Miller, Cheah, Swatch. Ramesh, et al., 2008; Wright

& Bell, 2009). There is substantial evidence for the mutual influence of family functioning,

health, and physical illness (Carr & Springer, 2010; Weihs, Fisher, & Baird, 2002) and for

the usefulness of family-centered interventions with chronic health conditions (Hartmann,

Bazner, Wild, Eisler, & Herzog, 2010; Kazak, 2006; Martire, Schulz, Helgeson, Small, &

Saghafi, 2010; Shields, Finley, Chawla, & Meadors, 2012). These systematic reviews sum-

marize the increasing body of research regarding the impact of serious illness on families

across the lifespan and the relationship of family processes to illness behavior, adherence,

and course.

FAMILY SYSTEMS ILLNESS MODEL

The Family Systems Illness (FSI) model (Rolland, 1994, in press) provides a useful con-

ceptual framework to guide assessment and intervention with neurocognitive conditions.

It was developed for clinical practice and research with families dealing with chronic and

life-threatening illness and disability. Grounded in a collaborative, strength-based sys-

temic approach, it can be usefully applied in a range of practice settings, in brief consulta-

tion, individual, couple, and family therapy, and group formats. It can be flexibly

integrated with and enhance different psychotherapy models.

The model views family relationships as a potential resource, addressing their illness-

related challenges and emphasizing possibilities for personal and relational resilience and

growth (Walsh, 2016a). Taking the family as the interactive focal point, this model attends

to the systemic interaction between an illness and family that evolves over time. The good-

ness of “fit” between the psychosocial demands of the disorder over time and the family

style of functioning and resources strongly influences successful versus dysfunctional cop-

ing and adaptation.

The FSI Model distinguishes three dimensions of the illness experience and trajectory

over time (Figure 1):

1. “psychosocial types” of health conditions based on the pattern of onset, course, out-

come, disability, and level of uncertainty,

2. major developmental phases in their evolution over time (initial crisis, chronic, termi-

nal). The concept of time phases enables researchers and clinicians to think longitudi-

nally about chronic conditions as an ongoing process that families navigate with

landmarks, transitions, and changing demands.

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