Self-compassion and quality of life after dementia diagnosis
Research type
Research Study
Full title
Is self-compassion associated with Older Adults’ quality of life after dementia diagnosis and does perceived threat posed by dementia mediate this relationship?
IRAS ID
326539
Contact name
Natasha Reed
Contact email
Sponsor organisation
Oxford Health NHS Foundation Trust
Duration of Study in the UK
0 years, 10 months, 2 days
Research summary
Summary of Research:
This study aims to investigate whether self-compassion is associated with older adults’ quality of life (QOL) after a diagnosis of dementia, as well as whether perceived threat posed by dementia mediates this relationship. Self-compassion has been found to be positive in supporting individuals in times of difficulty, in adjustment processes and older adults’ wellbeing. While different factors have begun to be identified which are associated with individuals’ psychological wellbeing and adjustment following a dementia diagnosis, little is known about the influence of self-compassion.According to the three systems model from Compassion-Focused Therapy (Gilbert, 2005), three separate systems interact to regulate emotions, namely: a threat system, which is activated in times of perceived threat, encouraging individuals to protect themselves and others; a goal-oriented and resource-seeking drive system (Depue & Morrone-Strupinsky, 2005); and a soothing system. Gilbert’s (2005, 2017) Social Mentality Theory suggests that self-compassion may facilitate feelings of connectedness, calm and safeness by activating the soothing system, and deactivating the threat system.
Participants will be recruited via NHS memory clinics/Join Dementia Research and from the community via third-sector organisations. Individuals will be invited to attend a Microsoft Teams/telephone appointment in which informed consent and cognitive screening processes will take place at the start. Eligible participants will then be invited to continue to complete measures administered by a researcher and an interview question. Participants will be offered the opportunity to complete the measures in a second session (within an 8-week timeframe), or using the online survey software, Qualtrics, if preferred.
This study hopes to extend existing understanding of factors associated with QOL following a dementia diagnosis. Furthermore, if self-compassion is found to influence QOL, this may facilitate timely identification of individuals who may benefit from post-diagnostic interventions to support better QOL.
Summary of Findings:
Lay summary of study results: Background Psychological Adjustment and Quality of Life after Dementia Diagnosis Older adults experience the sharing of a dementia diagnosis and adjustment to living with dementia differently. Individuals may experience relief at knowing the cause of their experiences, supporting future planning; however, a dementia diagnosis can be associated with difficult experiences such as frustration, anger, depression, anxiety and fear. It has also been suggested that individuals may experience implications of dementia diagnosis as a threat (Cheston & Christopher, 2019). Research has begun to identify factors influencing adjustment to dementia diagnosis and quality of life in people living with dementia.Emotion Regulation
Compassion-Focused Therapy’s 3 systems model (Gilbert, 2005) suggests that emotions are regulated by three separate, connected systems: an individuals’ threat system (activated in times of perceived threat and encouraging individuals to protect themselves/others; Gilbert, 2010); a drive system (orientated towards seeking resources and goal-achievement; Depue & Morrone-Strupinsky, 2005, as cited in Gilbert, 2014); and a soothing system (helping individuals to feel calm, connected and safeness; Gilbert, 2005; 2010).Self-compassion
Self-compassion is defined by Neff (2003b) as an attitude towards oneself, characterised by mindfulness, self-kindness and common humanity. Mindfulness involves taking a balanced, non-judgmental approach to one’s difficult emotions, considering context and others’ suffering. Self-kindness refers to an approach without self-criticism, self-blame or denial of difficulty, and rather, a stance of ‘warmth and understanding’ (Neff, 2008, p. 4). Common humanity involves individuals’ recognition that they are not alone in their difficult experiences (Neff, 2008). According to the Social Mentality Theory (Gilbert, 2005; 2017), self-compassion may activate the soothing system, deactivating the threat system and providing safeness. Research has found an association between how threatening a situation is perceived to be and the person’s emotional wellbeing.This study
Self-compassion has been associated with older adults’ wellbeing, and research suggests that self-compassion can support coping in times of difficulty. However, research in people living with dementia is currently limited. This study’s objective was to contribute to growing literature on factors influencing quality of life in people living with dementia by investigating whether self-compassion supports quality of life after diagnosis, and whether perceived threat posed by dementia mediates this relationship. Additionally, the study explored individuals’ perceptions of the importance of self-compassion since diagnosis to gain rich insight into the post-diagnostic experiences of people living with dementia.Method
After eligibility screening, 23 older adults aged 65 years or over who were diagnosed with dementia up to 12 months previously participated in this mixed-methods study. They were recruited through NHS memory clinics, Join Dementia Research, and third-sector organisations. Participants completed questionnaires about self-compassion, mood, perceived threat of diagnosis and quality of life, followed by an interview question, online or by telephone. Participants were allocated to ‘high’ and ‘low’ self-compassion groups for main analysis.Results
Quantitative findings
While self-compassion and quality of life were positively correlated across groups (p = .03), quality of life did not significantly differ between groups. Across the whole sample, self-compassion did not significantly predict quality of life, and the relationship between self-compassion and quality of life was not mediated by threat posed by dementia diagnosis. However, mediation analyses demonstrated relationships in expected directions.Qualitative findings
Thematic analysis of interview responses supported previous findings into the impact of diagnosis, such as shock and feelings of frustration. While some participants had not considered self-compassion since diagnosis, the majority expressed self-compassion as highly important. Manifestations of self-compassion varied, and they involved: acceptance of their circumstances and being understanding towards themselves; maintaining positivity and gratitude; continuing to engage in personally meaningful activities; continuing to be themselves; knowing they are not alone; treating themselves; prioritising their needs and preferences more than previously; and taking steps to take care of their physical health. Three participants spoke of the importance of treating oneself with self-compassion, however finding this challenging. Expressed difficulties in showing self-kindness were connected to self-criticism related to dementia-related experiences, wondering if they could have acted differently to prevent dementia, and not knowing how to express self-compassion.Implications
Findings suggest further studies with larger samples are warranted to better understand the relationship between self-compassion and quality of life in people living with dementia. This study provided important insight into the post-diagnostic experiences of a group of people living with dementia. For example, participants emphasised the importance of continuing personally-meaningful activities, knowing they are not alone in their journey, and taking care of their physical health to support management of their symptoms of dementia. These findings have possible clinical implications for improving targeted post-diagnostic support for people living with dementia to support self-compassion and quality of life.REC name
Wales REC 6
REC reference
23/WA/0339
Date of REC Opinion
20 Dec 2023
REC opinion
Favourable Opinion