The Experience of Being Diagnosed with Alzheimer’s Disease

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Jón Snædal
Berglind A. Magnusdottir
Daniel Olason
Arndis Valgardsdottir
Kristin Hannesdottir
Erla Gretarsdottir


Rationale and Aims: In research on Alzheimer’s disease (AD), the personal experience of individuals receiving this diagnosis is rarely the subject of research. Rather, the focus is restricted to the clinical symptoms and biological changes. Symptoms of AD are mainly reported by caregivers and rarely by the patients themselves, as they are deemed unreliable due to their memory problems. However, incorporating the voice of patients can improve the design of research projects and make the findings more relevant and meaningful. This could ultimately lead to improved and more personalized care for patients and their families. The aim of this study was to evaluate and quantify the personal experiences of individuals receiving a diagnosis of AD.
Methods: A total of 50 patients with newly diagnosed (3–14 months) AD and 50 relatives (1:1) participated. All participants answered a number of questionnaires, including the Alzheimer Dementia Crossroad Questionnaire (ADCQ), which is a novel questionnaire designed to evaluate their perception on how much the disease affected their daily lives. The ADCQ was also administered to their relatives, to assess how they perceived the disease was affecting the patient.
Results: Compared with their relatives, the patients were significantly more indifferent towards the diagnosis of AD and its importance/impact on their life (p < 0.001). The patients also estimated their own abilities in daily life to be better, compared with how their abilities were assessed by their relatives.
Interpretation: This study suggests that early AD patients experience serenity in relation to their situation. There are probably many potential reasons for this outcome. Individuals with AD diagnosis may have lost insight into their situation and abilities. The relatives might also underestimate the AD individual’s abilities. Irrespective of what might explain this outcome, this study highlights how differently an AD diagnosis affects patients and caregivers. Larger studies are needed to confirm these findings and further validate the ADCQ.

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