Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

Background:

Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.

Methods:

We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

Results:

In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.

Interpretation:

The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.The global prevalence of Alzheimer disease and related dementias is estimated to be 36 million people and is expected to double in the next 20 years.¹ Several recent strategies for providing care to patients with dementia have highlighted the importance of coordinated health care services for this growing population.^2–5 Gaps in the quality of care for people with dementia have been identified,^6–8 and improving their quality of care and health care experience has been identified as a priority area.^2–5Incorporating the health care experience of patients and caregivers in health service planning is important to ensure that their needs are met and that person-centred care is provided.⁹ The health care experience of people with dementia and their caregivers provides valuable information about preferences for services and service delivery.¹⁰ Matching available services to patient treatment preferences leads to improved patient outcomes^11,12 and satisfaction without increasing costs.¹³ Qualitative research is ideally suited to exploring the experiences and perspectives of patients and caregivers and has been used to examine these experiences for other conditions.¹⁴ We performed a systematic review and meta-ethnographic synthesis of qualitative studies exploring the health care experience of people with dementia and their caregivers in primary care settings, and we propose a conceptual framework for understanding and improving these health care experiences.     

Use of wild relatives to improve salt tolerance in wheat

There is considerable variability in salt tolerance amongst members of the Triticeae, with the tribe even containing a number of halophytes. This is a review of what is known of the differences in salt tolerance of selected species in this tribe of grasses, and the potential to use wild species to improve salt tolerance in wheat. Most investigators have concentrated on differences in ion accumulation in leaves, describing a desirable phenotype with low leaf Na+ concentration and a high K+/Na+ ratio. Little information is available on other traits (such as "tissue tolerance" of accumulated Na+ and Cl-) that might also contribute to salt tolerance. The sources of Na+ "exclusion" amongst the various genomes that make up tetraploid (AABB) durum wheat (Triticum turgidum L. ssp. durum), hexaploid (AABBDD) bread wheat (Triticum aestivum L. ssp. aestivum), and wild relatives (e.g. Aegilops spp., Thinopyrum spp., Elytrigia elongata syn. Lophopyrum elongatum, Hordeum spp.) are described. The halophytes display a capacity for Na+ "exclusion", and in some cases Cl- "exclusion", even at relatively high salinity. Significantly, it is possible to hybridize several wild species in the Triticeae with durum and bread wheat. Progenitors have been used to make synthetic hexaploids. Halophytic relatives, such as tall wheatgrass spp., have been used to produce amphiploids, disomic chromosome addition and substitution lines, and recombinant lines in wheat. Examples of improved Na+ "exclusion" and enhanced salt tolerance in various derivatives from these various hybridization programmes are given. As several sources of improved Na+ "exclusion" are now known to reside on different chromosomes in various genomes of species in the Triticeae, further work to identify the underlying mechanisms and then to pyramid the controlling genes for the various traits, that could act additively or even synergistically, might enable substantial gains in salt tolerance to be achieved.     

Psychosocial group intervention to enhance self-management skills of people with dementia and their caregivers: study protocol for a randomized controlled trial

ABSTRACT: BACKGROUND: After diagnosis of a dementing illness patients and their spouses have many concerns related to the disease and their future. This often leads to poor psychological well-being and reduced health related quality of life (HRQoL) of the family. Support for self-management skills has been proven to be an effective method to improve prognosis of asthma, heart failure and osteoarthritis. However, self-management interventions have not been studied in dementia. Therefore, our aim was to examine in an objective-oriented group intervention the efficacy of self-management support program (SMP) on the HRQoL of dementia patients and their spousal caregivers as well as on the sense of competence and psychological well-being of care-givers. METHODS: During the years 2011-12, 160 dementia patients and their spouses will be recruited from memory clinics and randomized into two arms: 80 patients for group-based SMP sessions including topics selected by the participants, 80 patients will serve as controls in for usual community care. Sessions may include topics on dementia, community services, active lifestyle and prevention for cognitive decline, spousal relationship, future planning and emotional well-being. The patients and spouses will have their separate group sessions (10 participants/group) once a week for 8 weeks. Main outcome measures will be patients' HRQoL (15D) and spousal caregivers' HRQoL (RAND-36), and sense of competence (SCQ). Secondary measures will be caregivers' psychological well-being (GHQ-12) and coping resources, patients' depression, cognition and signs of frailty. Data concerning admissions to institutional care and the use and costs of health and social services will be collected during a two year follow-up. DISCUSSION: This is a "proof -of-concept" study to explore the efficacy of group support for self-management skills among dementia families. It will also provide data on cost-effectiveness of the intervention.     

Detecting evolutionary rate heterogeneity among mangroves and their close terrestrial relatives

Mangroves form the dominant intertidal ecosystems and differ morphologically and physiologically from their close terrestrial relatives. We investigate the molecular evolutionary pattern of the typical mangrove family, i.e. Rhizophoraceae, and rate heterogeneity for the plastid matK and rbcL genes in different species of the family, as revealed by phylogenetic analyses and relative‐rate tests. Our study documents evolutionary rate heterogeneity in the Rhizophoraceae for the two genes: the mangrove genus Bruguiera has relatively slow substitution rates compared to the terrestrial genus Carallia at both synonymous and non‐synonymous sites in the matK sequences, and the synonymous and non‐synonymous substitution matrices are correlated. However, the rbcL non‐synonymous sites exhibit a high degree of rate heterogeneity among mangroves and related terrestrial groups, and uncoupling of rates with the synonymous sites. Selection is probably an important influence on the rate variation, suggesting further investigation for better understanding of various forces contributing to the rate heterogeneity and molecular adaptation in mangroves.     

A guide to the Lhc genes and their relatives in Arabidopsis

The Lhc super-gene family encodes the light-harvesting chlorophyll a/b-binding (LHC) proteins that constitute the antenna system of the photosynthetic apparatus, and also includes some relatives whose functions are more or less unknown. The Lhc super-gene family of Arabidopsis contains >30 members and the databases contain >1000 EST clones originating from these genes. This article presents an overview of these genes and provides some tools for researchers who want to use them in their studies.     

Perceptions of oral health among older Cambodians and their caregivers: A qualitative study

Objective

Older adults (those above the age of 60) are an emerging demographic in Cambodia, and very little is understood about their oral health experiences, needs, perceptions and behaviours. The aim of this study was to explore the oral health experiences, practices and perceptions of a convenience sample of a small but diverse group of older adults in Cambodia.

Method

A cross‐sectional qualitative study in which focus group interviews were conducted by 5 trained senior Cambodian dental students. A convenience sample of 56 older adults and caregivers was recruited across urban, semi‐urban and rural locations. Focus group conversations were recorded, transcribed and analysed thematically.

Results

The themes that emerged were around low expectations for both general health and oral health. A communal responsibility for health was expressed, and both money and transport were identified as key barriers to accessing care. Participants recognised that they had oral health problems, and acknowledged the impact of poor oral function on health and nutrition.

Conclusion

This study is an important first step in better understanding the oral health experiences and perceptions of older people in Cambodia. Participants described the impacts of poor oral health as being important, even when compared with other general health conditions.     

A meeting center for people from Surinam with dementia and their informal caregivers. Development and implementation of culture specific combined support

In this study we investigated the implementation of a support programme for Surinam people with dementia and their carers. The reason for setting up a new type of support was the finding that the regular care is unable to meet the needs of elderly people from ethnic minorities and their carers. We traced facilitating and impeding factors in the successful implementation of the support programme. We also evaluated the result of the implementation. Data were gathered among participants in the programme (n=24) by means of questionnaires. Semi-structured interviews were conducted with key figures (n=8) involved in setting up and implementing the meeting centre. The interview data were double coded and analyzed, using the computer programme NVivo. Demonstrably favourable factors for setting up the support program were: a thorough preliminary study and a type of support that is in line with the views of the organizations involved. Several factors proved to play a facilitating role during the phases of preparation and implementation, for example: motivated initiators and staff, effective cooperation between organizations and adequate financial resources. With regard to the result of the implementation, we concluded that this culture-specific type of support is feasible and successful; the targeted population is reached, people with dementia and their carers are satisfied with the support, and the attendance at the different elements of the support program has been very satisfactory.     

Transgene introgression from genetically modified crops to their wild relatives

Transgenes engineered into annual crops could be unintentionally introduced into the genomes of their free-living wild relatives. The fear is that these transgenes might persist in the environment and have negative ecological consequences. Are some crops or transgenic traits of more concern than others? Are there natural genetic barriers to minimize gene escape? Can the genetic transformation process be exploited to produce new barriers to gene flow? Questions abound, but luckily so do answers.     

Attitudes to oral care among caregivers in Japanese nursing homes

Objectives: The purpose of this study is to investigate oral care practice and awareness of it among caregivers in Japanese nursing homes. Methods: Caregivers were surveyed by means of a self‐administered questionnaire designed to elicit the following information: awareness of oral care, its importance, the burden involved in oral care, and systemization of oral care. Results: The results showed that most caregivers are adequately informed of the importance of oral care, but are inadequately educated in oral care and have little training in systematic oral care. Conclusion: The importance of providing appropriate and systematic oral care training must be stressed among caregivers along with the need to develop equipment to simplify and support oral care.     

Dermatoglyphic fingerprint heterogeneity among individuals with nonsyndromic cleft lip with or without cleft palate and their unaffected relatives in China and the Philippines

Cleft lip with or without cleft palate (CL/P) is a common birth defect (birth prevalence ranging from 1/500 to 1/2,000) with a complex etiology. Traits potentially related to CL/P, such as dermatoglyphics, may reflect the genetic and epidemiologic heterogeneity observed in CL/P. Such phenotypic heterogeneity in dermatoglyphic patterns may account for some of the variability in previously reported associations of dermatoglyphics and CL/P. To test this hypothesis, we took dermatoglyphic prints from individuals with nonsyndromic CL/P (n = 460) and their unaffected relatives (n = 254) from the Philippines and China. For both samples three raters designated the patterns as arch, ulnar loop, radial loop, whorl, or "other." Chi-square analysis and standard ANOVA were used to investigate heterogeneity between Filipino and Chinese study subjects. The significant associations between particular pattern types and CL/P were not the same in both populations, demonstrating population-specific association of CL/P and dermatoglyphic pattern types. The ANOVA of pattern type included both CL/P cases and their relatives, with affection status, sex, and population group as variables. For each pattern type except arches, population was significant (p < 0.0001); for radial loops, affection status was additionally significant (p < 0.0001). When only CL/P cases were considered, population was again significant for the ulnar loop (p < 0.0001), whorl (p < 0.0001), and "other" (p = 0.0002) patterns. The ANOVAs demonstrate between-population heterogeneity in dermatoglyphic pattern types. These results support our hypothesis that population-specific associations and population heterogeneity in dermatoglyphic patterns exist for CL/P cases and their relatives.