What Happens after Diagnosis? Experiences of People with Early-Stage Alzheimer's Disease Jean Gajardo (1) Figure 1. Categorization of themes and sub-themes
INTRODUCTION
RESULTS
Early detection and diagnostic disclosure of Alzheimer’s disease (AD) involves psychosocial consequences that challenge people to unfold strategies in search of adaptation and well-being (1). There’s growing information on the lived experience of people after diagnostic disclosure of Alzheimer’s disease (2).
From 2016 to 2017, 11 subjects who met criteria (6 men and 5 women) were interviewed, with average age 70 years old (64-82). Average time since diagnostic disclosure was 12 months (1-36). Table 1 describes participant characteristics.
OBJECTIVE
11 subjects were not included (4 subjects refused to participate, 4 subjects could not be contacted by telephone, 3 presented anosognosia).
Qualitative study including interviews to people with earlystage Alzheimer’s disease.
Five sub-themes of content were produced, describing relevant features of the lived experience after the diagnosis of Alzheimer’s disease: the enabling role of families, unsatisfied needs of information, anticipating the disease progression, ambivalence to disclose diagnosis, strategies for adaptation. Figure 1 shows themes and sub-themes of the experiences after diagnosis from the perception of people with AD.
Selected by purposive sampling, participants were referred by Neurologist at the Neurology Unit of Hospital del Salvador, Santiago, Chile.
Table 1. Characteristics of participants
This study aimed to describe the experiences of people after the disclosure of early-stage Alzheimer’s disease.
METHODS
Inclusion criteria: 60 years and older, diagnosis of dementia or Alzheimer’s disease in early stage performed by Neurologist or specialist, being aware of diagnosis (excluding anosognosia), and diagnosis disclosure during last 12 months. None of the participants had received psychosocial support after diagnostic disclosure. Interviews were conducted, transcribed, and analyzed through content analysis using sotfware NVivo Pro 11. Ethical approval for this study was granted by the Human Research Ethics Committee of the Faculty of Medicine, University of Chile.
No. Gender 1 2 3 4 5 6 7 8 9 10 11
Female Female Male Male Female Male Female Male Male Male Female
Time since Age Partnership diagnosis (Years) status (Months) 66 5 Married 79 8 Widow 65 36 Married 64 13 Married 72 12 Married 65 12 Married 64 5 Married 72 1 Married 74 18 Married 82 4 Married 74 12 Single
Living arrangements Living with spouse Living with daughter Living with spouse and sons Living with wife Living with husband Living with wife and son Living with husband and son Living with wife Living with wife Living with wife Living with sister
(1) Maki Y, Yamaguchi H. Early detection of dementia in the community under a community-based integrated care system. Geriatr Gerontol Int. 2014; 14 (S2):2–10. (2) Górska S, Forsyth K, Maciver D. Living With Dementia: A Meta-synthesis of Qualitative Research on the Lived Experience. Gerontologist. 2017;0(0):gnw195.
CONCLUSIONS People with AD unfold self-determined strategies to cope with the new diagnosis. For effective implementation of early diagnosis and management, psychosocial strategies supporting people with early-stage dementia may consider the needs of information, strengthening the role of family, and offering guidance on the process of disclosing the diagnosis to others. 1. Universidad de Chile, Santiago, Chile; Universidad San Sebastián, Santiago, Chile. Contact:
[email protected],
[email protected] 
