Assessing the well-being of patients with dementia: validity and reliability of the Spanish version of the Dementia Care Mapping (DCM) tool / La evaluación del bienestar en pacientes con demencia: validez y fiabilidad de la versión española del Dementia Care Mapping (DCM)

Abstract

Based on person-centred care (PCC), new instruments to assess the quality of life of elderly people with dementia, such as the Dementia Care Mapping (DCM) tool, have been developed. The aim of the study was to determine the psychometric properties of the DCM tool for its use in research into nursing homes. Sixty-eight elderly people who had dementia living in four different nursing homes participated in the study. DCM was applied twice (with six months difference between each administration) and its results were compared with the GENCAT scale of quality of life. Results showed that DCM has a limited concurrent validity, test-retest reliability and inner consistency, which questions its use as a research tool. The authors discuss the difficulty of evaluating the quality of life in people who have dementia and what the DCM tool really evaluates.     

The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.     

Appraisal of Memory Functioning and Memory Performance in Healthy Ageing and Early-Stage Alzheimer's Disease

ABSTRACT

Background/Aims: To compare memory evaluations in healthy older people and people with Alzheimer's disease (AD) and present standardised individual and dyadic methods for classifying degree of memory awareness in the participants with dementia. Methods: Cross-sectional study evaluating awareness of memory functioning and performance and providing normative data for healthy individuals and couples, together with comparison data from people with AD. Results: As a group, older people are reasonably accurate raters of their own memory functioning and performance, although considerable individual differences can be observed, and control dyads show good comparative accuracy. Comparing normative data from the control group to data from participants with AD confirms that significant overestimation is a frequent feature among people with dementia, with approximately two-thirds showing this pattern, although significant under-estimation is also reliably observed in a small proportion of people with dementia. Different types of measure elicit different profiles of memory awareness in participants with dementia. Conclusion: Normative data from older individuals and couples provides useful percentile-based indices for determining level of memory awareness in people with dementia.     

Normality in medicine: an empirical elucidation

Introduction

Dementia diseases, especially Alzheimer’s disease (AD), are of considerable importance in terms of social policy and health economics. Moreover, against the background of the current Karlsruhe judgement on the legalisation of assisted suicide, there are also questions to be asked about medical humanities in AD.

Methodology

Relevant literature on complementary forms of therapy and prognosis was included and discussed.

Results

Creative sociotherapeutic approaches (art, music, dance) and validating psychotherapeutic approaches show promise for suitability and efficiency in the treatment of dementia, but in some cases still need to be scientifically tested. Biomarker-based early diagnosis of dementia diseases is increasingly becoming a subject of debate against the background of the Karlsruhe ruling.

Discussion

Needs-oriented and resource-enhancing approaches can make a significant contribution to improving the quality of life of people with dementia. The discussion on the issue of “assisted suicide” should include questions of the dignity and value of a life with dementia.

Outlook

The integrative dementia therapy model can be complemented by a religion- and spirituality-based approach. Appropriate forms of psychotherapy should be scientifically evaluated.

     

Caregivers’ beliefs about dementia: findings from the IDEAL study

Abstract

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study.

Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline.

Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition.

Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.     

The experiences of person-centred counsellors working with suicidal clients online through the medium of text

ABSTRACT

In this study, we attempt to provide an understanding of the experiences of four UK-based person-centred counsellors working with suicidal clients online using text-based therapies and the impact of their clients’ suicidal ideation upon their “way of being”. The counsellors were selected purposively; each was working as a person-centred counsellor online, was encountering suicidal ideation in their clients, and was a member of a professional organisation. A narrative approach was taken, using unstructured interviews and a stanza format of representation. We found that participants had developed a way of being online that may be distinct from their in-person practice. Challenges included being more directive, lacking physical presence, lacking confidence in assessing risk and questions about empathic understanding. Working online with risk raises specific challenges for person-centred practitioners in line with what is indicated in the little relevant research currently already available.     

The experiences of transgender and non-binary children and young people and their parents in healthcare settings in England,UK: Interviews with members of a family support group

Abstract

Background: Transgender and non-binary children and young people and their parents in England, UK are poorly served across a range of healthcare settings. Whilst UK equalities legislation and international guidance on transgender healthcare pathways protects this group from discrimination and mandates an affirmative approach, services in England are not keeping pace.

Aims: This study aims to draw on the experiences of transgender and non-binary children, young people and their parents in a support group in England in order to investigate their experiences of healthcare provision, and to develop some ideas for improvement.

Method: Data was collected with participants in a family support group which offers a parent helpline service, social groups for children and parents, and training for schools and other organizations. 65 parents and children from 27 families from the family support group attended participatory workshops where they were given a range of briefs: “health,” “family,” “friends,” and “education.” Their participation involved being asked to define their own interview questions and collect data by interviewing each other. Their interview notes constituted the raw data. Data was coded inductively by the author with respondent checking as a second stage.

Results: Results constitute the views of a small group of people, so cannot be generalized. However, they do illustrate some of the issues which may arise. Participants’ experiences elicited five key themes: professionals’ perceived lack of clinical and therapeutic knowledge; mental distress caused by excessive waiting lists; professionals’ stereotyped gender assumptions; direct discrimination within healthcare settings; and a lack of attention to parent and child voice, especially in terms of school-based experiences and where a patient had a diagnosis of autism.     

Using circular questions to explore individual family member experiences of youth gender dysphoria in Australia

Abstract

Background: The number of young people reporting gender dysphoria is increasing worldwide, with gender dysphoria known to affect everyone in the family in unique ways. Previous research has highlighted the importance of family support and understanding; however, much less is known about individual and collective family member experiences, particularly for siblings under the age of 18?years.

Aims: This study sought to identify, describe and interpret individual family member experiences of youth gender dysphoria using semi-structured interviews, incorporating circular questioning, within a whole of family, clinical and wider social context.

Methods: Thirty-five individual family members living in Australia (nine young people aged 12-17?years experiencing gender dysphoria, 10 mothers, eight fathers, and eight siblings aged 11-17?years) were interviewed, exploring positive and negative experiences of youth gender dysphoria, within and outside of the family. Family relationships, support and healthcare experiences were also explored.

Results: All participants reported a mixture of positive and negative experiences of youth gender dysphoria. Levels of acceptance tended to change with the duration of transition, with most family members adapting with time. Siblings reported mixed experiences within the same family, with some struggling to adapt. Most family members felt that including the whole family in the healthcare of the young person was important, although dependent on individual circumstances and family context. Specialist gender care experiences were unanimously positive, although services were considered difficult to access.

Discussion: Family members reported shared and individual positive and negative experiences of youth gender dysphoria across social contexts. Accepting and facilitating gender transition for young people appeared to improve individual and family functioning. Most participants valued a whole of family approach within specialist healthcare. The use of circular questioning in the study helped dispel assumptions and facilitated curiosity for others’ experiences in the family.     

‘If they didn’t support me,I most likely wouldn’t be here’: Transgender young people and their parents negotiating medical treatment in Australia

Abstract

Background: It is increasingly recognized that transgender young people require affirming medical care, however the provision of such care may be mitigated by the availability of services and the views of parents.

Aims: This study aimed to explore the views of Australian transgender young people (aged 11–17) and their parents with regards to medical treatment.

Methods: Ten qualitative interviews were conducted with parent-child dyads in two Australian states. Thematic analysis was undertaken on responses to interview questions related to family relationships, views about medical treatment (specifically hormone blockers and hormones), and the relationship between medical treatment and sense of self.

Results: Themes developed focused on the importance of strong supportive parent-child relationships, the meaning of and access to hormone blockers, and the meaning of and access to hormones.

Discussion: The paper concludes by discussing the implications of the findings for clinical services, particularly in relation to supporting parents to be affirming of a transgender child, the need to prepare transgender young people and their parents for the passage of time in regards to medical treatment, and the need to focus on expectations in regards to sense of self in relation to medical treatment.     

Trans,gender diverse and non-binary adult experiences of social support: A systematic quantitative literature review

Abstract

Background: Trans, gender diverse and non-binary (TGDNB) adults experience significant health disparities relative to their cisgender peers. While social support is a known health-protective factor within the general population, no systematic reviews of TGDNB experiences of social support exist.

Aim: To systematically review prior research of social support for TGDNB adults. We sought to assess the defining characteristics of the research, the participants and the research findings, mapping emerging trends across disciplines.

Methods: Six electronic databases (PubMed, MEDLINE, CINAHL, Web of Science, LGBT Life and PsycNet) were searched for literature pertaining to TGDNB adults, social support, and health or well-being published in the past decade.

Results: The findings illustrate a predominance of USA-based quantitative research that measures social support of friends, family and a singular intimate partner. The majority of participants were white, binary-identified transgender women and TGDNB people living in metropolitan settings. Social support was commonly reported as a protective factor, with TGDNB peer support the most frequently reported correlate of health and well-being for TGDNB adults.

Discussion: The results suggest standardized inventories do not capture the emic nature of social support for TGDNB adults. A key opportunity lies in an inductive, hypothesis-forming approach to the study of what is socially supportive for TGDNB adults. In turn, this knowledge will enable the appropriate measurement, implementation and interpretation of social support studies.     

Experiences of surgery readiness assessments in British Columbia

Abstract

Background: A surgical readiness assessment is a major step in the medical journey of trans people seeking gender-affirming surgery. Much of the peer-reviewed literature surrounding surgical readiness assessments emphasizes the perspectives of academics and clinicians, leaving the voices of trans and gender diverse patients largely unheard.

Aims: This paper foregrounds patient experiences with surgery readiness assessments to discuss the tensions, challenges and opportunities they generate.

Methods: We conducted a thematic analysis of 35 in-depth interviews with trans people who accessed or were seeking to access gender-affirming surgery in British Columbia.

Results: We developed three main themes to capture participants’ narratives of their surgical assessment experiences. The first, assessments as gatekeeping, explores the stories of people who described their assessments as outdated and even discriminatory processes. The second, assessments as a barrier to care, discusses the informational missteps, bureaucratic regulations, economic issues, and geographic concerns that made assessments difficult to access. The third, assessments as useful, includes positive stories about assessments that often involved feeling supported by an assessor and feeling prepared for the next steps.

Discussion: These narratives demonstrate how much variation exists among people’s experiences of readiness assessments for gender-affirming surgery. No matter how their actual assessment turned out, many participants approached their appointments with a great deal of anxiety and trepidation. We attributed this stress was to challenges ranging from lengthy wait times, arbitrary medical gatekeeping, a lack of access to knowledgeable and supportive providers, unclear or changing administrative processes, and insufficient communication. To address these challenges, it is crucial for the medical system to create more accessible pathways with centralized, up-to-date information for people trying to access assessments. Patients are best served by multi-disciplinary gender-affirming teams that provide individualized care.     

Housing insecurity and intersecting social determinants of health among transgender people in the USA: A targeted ethnography

Abstract

Background: Housing is an important social determinant of health (SDOH). Transgender people face a unique blend of discrimination and compromised social services, putting them at risk for housing insecurity and associated public health concerns.

Aims: This targeted ethnography explores housing insecurity as a SDOH among transgender people in the U.S.

Methods: In-depth interviews were conducted with transgender people (n?=?41) throughout the U.S.A., identified through purposive sampling. A semi-structured guide was used to elicit personal stories and peer accounts of insecure housing experiences and coping strategies. Interviews were audio recorded and transcribed. Data was coded, sorted, and analyzed for key themes.

Results: Responses revealed pervasive housing insecurity and inter-related challenges. Respondents discussed how intersecting identities create unique constellations of vulnerability, which “intersect like a star.” Financial insecurity and interpersonal rejection were lead housing insecurity causes, often resulting in psychological strain, which was sometimes addressed with substances and sexual risk-taking. These factors were cyclically accompanied by financial and employment insecurity and a cascade of unmet social needs. Social support facilitated coping.

Discussion: Findings support increasing transgender housing security intervention resources that address intersecting and cyclical discrimination, trauma, housing, employment, and health issues.     

Parental desire and fertility preservation in assigned male at birth transgender people living in Belgium

Abstract

Introduction: Transgender people who chose to proceed with gender affirming hormonal and/or surgical therapy, may face reduced options for fulfilling their parental desire in the future. The ideas and concerns of adult transgender people regarding fertility preservation and parental desire have never been reported in a large, non-clinical sample of assigned male at birth (AMAB) transgender people.

Methods: A web-based survey on fertility and parenthood in (binary and non-binary) transgender people was conducted in Belgium. AMAB people were selected for this analysis.

Results: We included 254 AMAB persons, of which 196 (77.2%) self-identified as transgender women (TW), 14 (5.5%) as cross-dressers and 44 (17.3%) as gender non-binary (GNB) people. Fifty-five (21.6%) respondents had a current/future parental desire, parental desire was already fulfilled in 81 (31.9%) and not present in 57 people (22.4%) (other: 19.2%). TW were more likely to express a parental desire, compared to GNB people and cross-dressers (P?=?0.004). In total, 196 AMAB people previously sought medical assistance, of which 30 (15.3%) considered the loss of fertility due to the transitioning process undesirable. The majority (68.2%) did not want fertility preservation (FP). Fourteen people (9.8%) had proceeded with FP. The main reasons not to proceed with FP included not feeling the need (70; 68.0%), not desiring a genetic link with (future) child(ren) (20; 19.4%) and having to postpone hormone treatment (15; 14.6%). TW were more likely to have a parental desire and to have cryopreserved or to consider cryopreserving gametes, compared to GNB people.

Conclusion: Parental desire and FP use were lower in the current non-clinical sample than in previous research on clinical samples. This can possibly be explained by the barriers transgender people face when considering fertility options, including postponing hormone therapy. Also, GNB persons have different needs for gender affirming treatment and FP.     

Common barriers to healthcare for transgender people in the U.S. Southeast

Abstract

Background: Transgender and non-binary people are more likely to face barriers to healthcare than their cisgender counterparts. The majority of work in this area centers on the experiences of transgender people in northern cities and urban enclaves, yet over 500,000 transgender people live in the U.S. Southeast.

Aims: The purpose of this study is to explore barriers to healthcare among transgender people in the U.S. Southeast.

Methods: The research team conducted four 120-minute focus groups (eligibility criteria: 18?years or older, self-identify as transgender, live in the U.S. Southeast). Participants completed a demographic questionnaire prior to the start of the focus group. Each focus group explored access to and experiences of receiving basic healthcare as a transgender person in the U.S. Southeast. Established qualitative methods were used to conduct the focus groups and data analysis.

Results: Participants (n?=?48) ranged in age from 19 to 65, with the majority identifying as trans women (43.8%) and non-binary (33.3%). The sample was racially diverse: White (50%), Black (37.5%), and Latinx or Multiracial (12.5%). Multiple barriers to care were identified: (1) fear and mistrust of providers; (2) inconsistency in access to healthcare; (3) disrespect from providers; and, (4) mistreatment due to intersecting experiences of gender, race, class, and location.

Discussion: Transgender Southerners face barriers to care at the structural, cultural, and interpersonal levels. The study results have implications for researchers, as well as providers, practices, and health care systems throughout the region.     

Changing fit and fat bias using an implicit retraining task

Objective: To change implicit and explicit bias so that active obese people are regarded as more fit and normal weight sedentary people as less fit.

Design: Study one created a questionnaire that measured perceptions of active obese persons and sedentary normal weight persons on fitness-related items. Study two used a modified visual probe task to retrain perceptions regarding active obese persons and sedentary normal weight persons.

Main outcome measures: Self-reported explicit bias was measured with a questionnaire and implicit bias was measured with response times collected during a visual probe task.

Results: The questionnaire reliably measured ‘fitness and fatness’ perceptions. In study two, pairing images of active obese persons with positive activity-related words resulted in active obese persons being explicitly rated more fit; pairing images of normal weight sedentary persons with negative words associated with sedentary lifestyles increased endorsement of normal weight people as unfit. There were no changes in implicit bias.

Conclusions: Bias regarding how body weight is thought of relative to fitness can be altered by pairing images of obese persons being active with words such as ‘health’ and ‘fit’. This is evidence that representations of persons of all body weight should be used when promoting physical activity.     

Listening to People with Dementia: A Pastoral Care Perspective

SUMMARY

Pastoral and Spiritual Care approaches to the reduction of depression in residential aged care facilities are considered. They are examined through specific one-to-one pastoral care, through a pastoral care person in the team approach to care and through a one-to-many relationship for group spiritual and religious activities. The suggestions in this article are offered as extensions to a manual, Challenge Depression, on managing depression in residential aged care as a way of including pastoral and spiritual care as part of an integrated approach and as part of a stand alone approach of pastoral care.     

Spirituality,quality of life,and depression in older people with dementia

ABSTRACT

This study aimed to observe dementia’s role in the relationship between spirituality, quality of life, and depression in aging. The sample included 61 participants between 65 and 98 years old, separated into two groups: participants diagnosed with dementia (N = 31) and control participants (N = 30). There was no significant difference in spirituality between demented and control participants; however, different patterns of correlation were observed between spirituality, depression, and quality of life in these groups. Although the level of spirituality did not differ despite dementia, this pathology would appear to play a role in the relationship between spirituality, quality of life, and depression.     

When Words Are No Longer Necessary: The Gift of Ritual

SUMMARY

This study is an exploration of non-verbal forms of communication which have become ritualised, particularly m the care of people with dementia. Rituals, which are culturally determined, may be inclusive or exclusive; they may lose their meaning or send out mixed messages, but m general they uphold the structure of society. There is a strong link between religion and ritual and for people with dementia, ritual may be extremely important m maintaining their sense of belonging within the community of faith. It looks at some of the issues to be addressed when worshipping with people with dementia.     

Feeling bad about progress does not lead people want to change their health behaviour

Objective: When do people decide to do something about problematic health behaviours? Theoretical models and pragmatic considerations suggest that people should take action when they feel bad about their progress – in other words, when they experience negative progress-related affect. However, the impact of progress-related affect on goal striving has rarely been investigated.

Design and Methods: Study 1 (N = 744) adopted a cross-sectional design and examined the extent to which measures of progress-related affect were correlated with intentions to take action. Study 2 (N = 409) investigated the impact of manipulating progress-related affect on intentions and behaviour in an experimental design.

Results: Study 1 found that, while engaging in health behaviours had the expected affective consequences (e.g. people felt bad when they were not eating healthily, exercising regularly or limiting their alcohol consumption), it was feeling good rather than bad about progress that was associated with stronger intentions. Study 2 replicated these findings. Participants induced to feel good about their eating behaviour had marginally stronger intentions to eat healthily than participants led to feel bad about their eating behaviour.

Conclusion: The findings have implications for interventions designed to promote changes in health behaviour, as well as theoretical frameworks for understanding self-regulation.