Dementia

Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers’ guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt.

Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers’ guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables.

Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt (β = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (β = −0.10; p< 0.05; 95% CI: −0.18 to −0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (β = −0.07; p = 0.10; 95% CI: −0.16 to 0.01).

More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes.

To present findings about experiences of relational caring at an arts-based academy for persons living with dementia.

There is a compelling call and need for connection and relationships in communities living with dementia. This study shares what is possible when a creative arts-based academy for persons living with dementia grounded in relational inquiry and caring focuses on relationships through the medium of the arts.

A qualitative phenomenological methodology (informed by van Manen) was used to answer the research question, “What is it like to experience relational caring at an arts-based academy for persons living with dementia?” We address two research objectives: (1) to explore how relationships are experienced when a relational caring philosophy underpins practice, including arts-based engagements; and (2) to understand the meaning of relationships that bring quality to day-to-day living.

Twenty-five participants were recruited from the Academy and interviewed in one-to-one in-depth interviews or small groups. Participants included five persons living with dementia, eight family members, four staff, five artists, one personal support worker, and two volunteers. Participants were asked to describe their experiences of relational caring or relationships in the Academy space.

Three thematic patterns emerged, which address the research objectives.

Relational caring is experienced when:

freedom and fluid engagement inspire a connected spontaneous liveliness;

Findings contribute to the growing body of knowledge about both relational caring and arts-based practices that call forth a different ethic of care—one that is relational, inclusive, and intentional. Findings also shed light on what is possible when a relational caring philosophy underpins arts-based practices—everyone thrives.

Psychosocial support for people with dementia with Lewy bodies (DLB) and family care partners is frequently lacking, despite the need expressed by those with lived experience. Our objective was to examine the feasibility and acceptability of an intervention designed to build coping capability.

The design was non-randomised with all participants receiving the intervention.

The setting was a Memory Assessment and Management Service in the Northeast of England.

Participants comprised 19 dyads consisting of a person with DLB and a family care partner.

The intervention was group-based, with weekly sessions attended for up to four successive weeks. It was informed by Social Cognitive Theory.

Data were collected on recruitment, attendance and attrition, self-efficacy, mood, stress and participant experience.

Recruitment was achieved with minimal attrition and three successive groups were delivered. Care partners felt more in control and able to cope in at least 3 of 13 areas with 73% feeling this way in eight or more areas. Three themes were identified from post-intervention interviews: people like us, outcomes from being a group member and intervention design.

A DLB-specific group intervention is acceptable to people with DLB and family care partners, and recruitment is feasible within a specialist service. Participation may enhance understanding of this condition and reduce social isolation. It may improve care partners’ coping capability particularly if targeted towards those with low prior understanding of DLB and more stress. Means of evaluating outcomes for people with DLB need further development.

Residential care facilities (RCFs) strive to enhance autonomy for people with dementia and to enhance informal care provision, although this is difficult. This study explored how RCF staff can enhance autonomy and improve informal care by looking at the influence of interactions (contact and approachability between residents, staff members and informal caregivers) and the physical environment, including the use of technologies.

A realist evaluation multiple-case study was conducted using document analyses, eight semi-structured interviews with staff members and relatives and 56 hours of observations of residents across two RCFs aiming to provide person-centred care. Realist logic of analysis was performed, involving Context-Mechanism-Outcome configurations.

The behaviour, attitudes and interactions of staff members with residents and informal caregivers appeared to contribute to the autonomy of people with dementia and enhance informal care provision. The physical environment of the RCFs and the use of technologies were less relevant to enhancing autonomy and informal care provision, although they can support staff members in providing person-centred care in daily practice.

The findings add to those of other studies regarding the importance of interaction between residents, staff members and informal caregivers. The findings provide insight for other RCFs on how successfully to enhance autonomy for their residents and to improve informal care provision, as well as, more broadly, how to implement person-centred care.

Hypersexuality is one of the behavioral and psychological symptoms of dementia. This symptom can lead to poor quality of life for the person who lives with dementia, as well as for his or her caregiver, who might be exposed to sexual assault.

This study aimed to highlight the experience of an older woman living and coping with a spouse who exhibits dementia-related hypersexuality.

A narrative case-study of a single case was designed, composed of four semi-structured interviews conducted over a 10-month period. The data were analyzed through thematic, structural, and performance analysis.

Four phases were revealed, depicting the experience of being a partner and caregiver of a spouse with dementia-related hypersexuality: a) “I need help”: A distress call; b) “It depends how long I agree to go on with it”: Living with the ambiguous reality of dementia-related hypersexual behavior within an ongoing intimate relationship; c) “It’s as if I’m hugging someone who’s no longer alive”: The transition from the previous couplehood identity to a new couplehood identity; and d) “I am just taking care of him as if he is a child”: A compassionate couplehood identity construction.

Living with a partner with dementia-related hypersexuality is a distressing experience for the caregiver-spouse. Yet, positive memories from a long intimate relationship can lead to the creation of a compassionate identity, which supports the caregiving process, and creates a sense of acceptance and meaning making. This, in turn, enables a positive aging experience. These finding have some practical implications for supporting and intervening in such cases.

In the past years an increasing amount of research has been done on the experiences of adult children of a parent with early-onset dementia. However, little is still known about how the socio-cultural context influences the narratives of these children.

This study aimed to provide insights into the far-reaching consequences of parental early-onset dementia for adult children in the Netherlands. It illustrates how the experiences of these adult children are shaped by the context they live in.

16 in-depth interviews were conducted with adult children of a parent with early-onset dementia in the Netherlands. The interviews offered the children space to reflect on the impact the illness of their parent had on them and their lives. The data were analysed using thematic analysis.

This article illustrates that the comparative processes of relating to others' experiences help the children to reflect on the impact that their parent's illness has on their own lives, which in turn aids them in contextualising and making meaning out of their changing lives and relationships. This contextualization and recovery of meaning is shaped by three processes. The first concerns the ways these adult children draw comparisons between their own lives and experiences and those of their peers of the same age group. The second process entails comparative understandings of having a parent with early-onset dementia versus having a parent with late-onset dementia. The third process explores how having a parent with early-onset dementia compares to having a parent with other diseases. The processes of contextualisation which the adult children engage in are shaped by what the children perceive to be normal and thus also by their socio-cultural contexts.

This article reveals how meaning is created in a constant interplay between the primary experiences of having an ill parent and the socio-cultural context in which the experiences take place. It illustrates how this context provides for particular narratives, which in turn shape how the children are able to give meaning to their experiences.

The COVID-19 pandemic has unprecedented consequences for the management of chronic diseases such as dementia. However, limited evidence exists on the condition of persons with dementia and their caregivers during the pandemic in lower-middle-income countries (LMICs). The study aimed to provide insights into the experiences of persons with dementia and their families during the early phases of the pandemic in India.

This study adopted a mixed-method approach. One hundred and four persons with dementia and their caregivers were evaluated via telephone using validated instruments and a semi-structured interview guide. We used the quantitative data collected to establish a baseline, whereas qualitative data were analysed thematically.

The study revealed that persons with dementia and their caregivers experienced difficulties during the pandemic, which included worsening of behaviour, problems in accessing care, disruptions in functional activities and struggles in enforcing infection prevention contributing to caregiver distress. An important finding that emerged was the unchanging reality of caregiving for families. The relative success of the public health response to the COVID-19 pandemic contrasted with the lack of awareness and formal support for dementia.

The COVID-19 pandemic has exposed the vulnerabilities of persons with dementia and their caregivers. This calls for a collaborative reframing of medical care and public health policies to address dementia care.

To explore the different factors of resilience for people living with dementia and unpaid carers, in response to sudden changes in care and lifestyle during the COVID-19 pandemic.

Unpaid carers and people living with dementia were offered telephone interviews in April 2020 to discuss their experiences since the COVID-19 pandemic. Participants were asked about the benefits and challenges of accessing dementia support, as well as coping, symptoms, strategies and impacts. Each transcript was analysed using inductive and deductive thematic analysis by two researchers.

Semi-structured interviews from 50 participants (n = 42 unpaid carers and n = 8 people living with dementia) reported protective and risk factors of resilience concerning (1) communication, (2) adaptations, (3) support networks and (4) lifestyle factors and coping mechanisms.

Resilience factors considered both organisational factors for external support, along with individual coping mechanisms. Organisations and social support services should consider resilience factors in future service planning, to better support people living with dementia, or caring someone living with dementia, during times of great stress. The ecological model of resilience established from this research refers to resilience during times of unexpected change in the COVID-19 pandemic; however, it could be considered relevant in other periods of high stress within this cohort.

Pain in older persons with dementia is both under-detected and under-managed. Family caregivers can play an important role in addressing these deficiencies by communicating their care recipient’s symptoms and behaviors to medical providers, but little is known about how caregivers and providers approach pain-related discussions in the context of dementia. The goal of this study was to explore how ambulatory care providers and family caregivers of persons with dementia view pain communication.

In-depth, semi-structured interviews were conducted with family caregivers (n = 18) and healthcare providers involved in dementia care (n = 16). Interviews focused on three specific content areas: (1) caregivers’ roles in communicating about pain in persons with dementia, (2) challenges experienced when communicating about pain in persons with dementia, and (3) strategies and recommendations for optimizing communication in this context. All interviews were audio-recorded, transcribed, and analyzed using the constant comparative method of data analysis.

Caregivers and providers described various roles that caregivers assumed in communication processes, such as serving as historians, interpreters, and advocates. They identified two key features of problematic communication—receipt of inadequate information and interpersonal conflict about the care recipient’s pain—and articulated how ambiguity around pain and dementia, as well as preexisting beliefs and emotions, contributed to communication challenges. They also offered several suggestions to improve caregiver–provider communication processes, including the use of (1) written records to enhance the accuracy of caregivers’ reports and ensure that providers had specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers’ contributions and maximize a team-based decision-making.

Receipt of inadequate information and interpersonal conflict are key challenges to caregiver–provider communication regarding pain in persons with dementia. Written records, pain scales, and rapport-building strategies may help to address these challenges.

There is increasing awareness of the benefits of both physical and psychosocial interventions to empower and benefit people with dementia and their caregivers. However, the potential additional benefits of combining physical and psychosocial interventions have only been sparsely explored. The aim of this pilot study was to investigate the acceptability and potential impact of a multicomponent intervention comprising physical exercise, cognitive stimulation therapy (CST), psychoeducation and counselling for people with early-stage dementia.

A 15-week multicomponent group-based intervention was offered to people with early-stage dementia in Denmark (N = 44). A mixed-methods design combining interviews, observations, tests of cognitive and physical functioning and an interviewer-assisted questionnaire on quality of life was applied to (1) investigate acceptability of the intervention, including whether people with dementia and their caregivers found the intervention meaningful and (2) to explore and assess changes in participants’ physical and cognitive functioning and quality of life. The study was conducted between June 2018 and August 2019.

The pilot study demonstrated that the multicomponent intervention was acceptable for people with early-stage dementia and their caregivers. Test results did not show significant changes in measures of participants’ physical and cognitive functioning or quality of life. However, qualitative data revealed that participants perceived the intervention as meaningful and found that it had a positive influence on their physical and social well-being. In addition, interaction and support from peers and staff members was considered important and rewarding.

This multicomponent intervention constitutes a meaningful and beneficial activity for people with early-stage dementia and their caregivers. It provides an opportunity to engage in social interactions with peers and experience professional support. The study also underlines the importance of providing prolonged and sustainable interventions for people with dementia to maintain personal and social benefits.

Supporting people to live well with dementia is an international government priority. People living with dementia experience a range of positive emotions despite the challenges associated with dementia. Further research is needed to explore how these positive experiences can be fostered to support well-being. There is empirical evidence of the benefits of gratitude in other clinical groups, but no studies have explored how gratitude is experienced by people living with dementia.

In this mixed-methods study, eight people living with dementia shared their experiences of gratitude through interviews and gratitude diaries. Qualitative data were analysed using interpretative phenomenological analysis. Quantitative data regarding diary use were analysed using descriptive statistics.

Gratitude holds interpersonal and transpersonal meanings for people living with dementia, balanced with challenges of dementia and ageing. This study offers insight into the existence and relevance of gratitude for people living with dementia, highlighting the importance of using multiple methods in dementia research. Positive psychology interventions informed by these findings may be effective in supporting well-being for people with dementia.