Experiences in early stage Alzheimer's disease: Understanding the paradox of acceptance and denial

Abstract

A wealth of information about the biomedical aspects of Alzheimer's disease (AD), the most prevalent dementia among people over age 65, stands in counterpoint to the lack of systematic inquiry around the lived experiences of people with AD. Thirteen (four women, nine men) people, recently diagnosed with early stage AD, participated in this 6-month longitudinal study. This paper reports on AD participant's interviews which focussed on their experiences of AD symptoms, relationships with family and friends, and thoughts about the future. The transcribed interviews, analysed using methodological hermeneutics, revealed a constitutive theme of agency versus objectification and explained the paradox of why people with AD use both acceptance and denial when speaking about their experiences. Participants simultaneously acknowledged and resisted aspects of their disease in order to maintain agency in the face of cognitive losses. Acknowledgement was expressed through the themes involving acceptance of the disease and its symptoms, expression of feelings about the disease, and strategies to cope with the symptoms. Resistance was expressed in themes involving denial, minimization, normalization, and reminiscence about achievements and experiences of competence. Longitudinal analyses of the narratives indicated themes held across time. This research contributes to understanding how people live with early stage AD. Living with AD should not be described as either denial or acceptance, but rather as a paradox of understanding that includes both acknowledgement and resistance.

The paradox of dementia: Changes in assimilation after receiving a diagnosis of dementia

“…This approaching and retreating from awareness, illustrates the paradox of acceptance and denial which has been observed in other studies. Thus Macquarrie (2005) found that participants simultaneously both acknowledged and resisted aspects of their disease in order to maintain agency in the face of cognitive losses. Similarly Pearce et al (2002) found that denial appeared to be part of a cyclical process of slowly turning to face the situation, rather than accepting it immediately.…”

“…In recent years, a series of studies have explored the awareness of people living with dementia about many different aspects of their illness (Clare, 2002;2003;: 2012Sabat, 2002a;2002b;2006;Cheston, 2005;Clare et al, 2005;Macquarrie, 2005;Vernooij-Dassen et al, 2006;Clare et al, 2012).…”

Living with dementia from the perspective of older people: Is it a positive story?

“…Coping strategies were aimed at maintaining a sense of connectedness and hence a sense of self. MacQuarrie (2005) identified a dialectical tension between agency and objectification.…”

How does a woman with Alzheimer’s disease make sense of becoming cared for?

“…Similar themes of self-maintaining or selfadjusting behaviours have been described by people with AD when managing threats to self, such as normalizing the effects of the illness or acknowledging the illness and its difficulties and creating a new sense of self (Clare 2003). MacQuarrie (2004) terms the lived experience of AD as a dialectical tension between agency and objectification. Agency refers to the autonomous individual who demonstrates independence and a determination to take control of life, whilst the objectified self reflects a disempowerment the same person may feel as they are redefined as 'patient' due to their need for assistance with daily activities.…”

“…For many people with AD, care is interpreted as practical support, such as remembering appointments and being an advocate (Preston et al, 2006) and emotional support in the maintenance of relationships (Wolverson et al, 2009). However, some acts of care, although well meant, can be interpreted by men and women with AD as a diminishment of their personhood (MacQuarrie, 2004).…”