The experience of apathy in dementia: A qualitative study

Abstract

AbstractBackgroundThe presence of apathy is associated with less favourable outcomes in dementia, including more rapid functional and cognitive decline, greater disease severity and increased mortality. We aimed to explore and gain an understanding into how people with dementia experience apathy, and consequently suggest effective interventions to help them and their carers.Method12 participants (6 dyads of 6 people with dementia and their family carers) were recruited from memory cafés, social groups, seminars and Patient and Public Involvement (PPI) meetings. People with dementia and their carers were interviewed separately and simultaneously. Quantitative data was collected using the following validated scales: Apathy Evaluation Scale (AES), short Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Montreal Cognitive Assessment (MOCA), Cornell Scale for Depression in Dementia (CSSD) and Hospital Anxiety and Depression (HAD). The interviews were semi‐structured, focusing on the subjective interpretation of apathy and impact on behaviour, habits, hobbies, relationships, mood and activities of daily living. Interviews were recorded and transcribed and analysed using interpretative phenomenological analysis (IPA) which generated codes and patterns, which were collated into themes.ResultThe participants with dementia had mild to moderate degrees of cognitive impairment, with a range between 9‐22 (out of 30) on the MOCA. They reported moderate levels of apathy on the AES.Four superordinate themes were identified, three of which highlighted the challenging aspects of apathy: “Losing one’s sense of self”; “Feeling like a burden” and “Hindered by invisible obstacles”. One theme: ''What keeps me going’’, described the positive aspects of the individuals’ efforts to overcome apathy and remain connected with the world and people around them.ConclusionThis study is the first to illustrate and conceptualise the subjective experience of apathy in dementia, portraying it as a more complex and active phenomenon than the traditional view of apathy being simply negative and hopeless. Our study reveals a struggle against cognitive difficulties, fear of failure and invisible obstacles, with individuals desperate to remain connected, and appreciative of their carers’ efforts to help them. Apathy and its effects warrant more attention from clinicians, researchers and others involved in dementia care.