Oral health practices and beliefs among caregivers of the dependent elderly

doi: 10.1111/j.1741‐2358.2011.00553.x Oral health practices and beliefs among caregivers of the dependent elderly Background: Caregivers deal with oral health care of the dependent elderly; however, this has a low priority among them, and their education in daily oral care is deficient. Therefore, studying the oral care practices as well as their oral health beliefs is important as these affect the quality of the oral care they perform. Objective: To compare formal and informal caregivers’ oral care practices and oral health beliefs when taking care of severely dependent elderly. Material and methods: A cross‐sectional study was conducted on a convenience sample of 21 formal caregivers from a long‐term residence and 18 informal caregivers from a local primary health care domiciliary programme. Caregivers were surveyed using a questionnaire designed to elicit oral care practices and oral health beliefs. The nursing Dental Coping Beliefs Scale questionnaire was translated and validated in Chile. Results: Significant differences were observed between formal and informal caregivers’ performance of some oral health care practices. There were no significant differences between formal and informal caregivers’ oral health beliefs. Conclusions: Although there are some differences in formal and informal caregivers’ oral health care practices, we cannot state that one caregiver’s performance is better than the other, in fact, negative oral health beliefs were found in both groups.     

Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.     

Waiting list for nursing home admission gives limited insight of the problems. Study in handling of the waiting list and the consequences for the patients

The waiting list for nursing home admission is expected to remain unacceptably long. A study of the use and of possibly problematic consequences of the waiting list was described in a thesis. Despite long mean waiting periods and many problems (depressive symptoms, experiences of burden) already at the start of the waiting period, the majority of the informal caregivers were satisfied with the waiting times. This may be explained by a reticence to nursing home admission and by enlistment to the waiting list "out of precaution". Both a long and a short waiting period could be experienced as too long. Waiting list figures give insufficient insight in the "real" demand for nursing home care and in problematic waiting periods.     

Being a burden to others and wishes to die: The importance of the sociopolitical context

All articles in May 2019’s special issue of Bioethics offer profound insights into the issue of “being a burden to others” in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon “being a burden” in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of “being a burden” therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon “being a burden” as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on “being a burden” in relation to the practice of physician-assisted dying in the Netherlands.     

Does becoming an informal caregiver make your health worse? A longitudinal analysis across Europe

ObjectiveTo determine whether becoming an informal caregiver in Europe has a significant effect on health status, compared with non-informal caregivers, distinguishing by place of residence (in or outside the home of the care receivers) and country. And to determine whether there is an adaptation effect after the passage of time.MethodsThe Survey of Health, Aging and Retirement in Europe (2004–2017) was used. Propensity score matching was applied to analyse the differences in the health status of people who became informal carers between different periods and those who did not. We considered short-term (2–3 years after the shock) and medium-term effects (4–5 years).ResultsIn the short term, the probability of those who became informal caregivers being depressed was 3.7% points (p.p.) higher than among their counterparts, being higher among those who lived in the care recipients’ homes (12.8 p.p.) and those providing care outside and at home (12.9 p.p.). Significant differences in the probability of being depressed were also observed by country (Southern and Eastern Europe), and in countries with low expenditure on long-term care (LTC). Those effects remained in the medium term. No significant effects were found in cancer, stroke, heart attack and diabetes.ConclusionsThe results might help to concentrate a major effort of any policy in the field of mental health on the period immediately after the negative shock, especially for those caregivers who live with the care receiver, for those in Southern and Eastern Europe and in countries with low expenditure on LTC.     

Oral health care issues in aged care facilities in Western Australia: resident and family caregiver views

Objective: To investigate resident and family perceptions and attitudes towards oral health care and access to dental services for aged care facility residents. Method: Focus groups and individual interviews with residents and family caregivers were conducted at aged care facilities in the Perth Metropolitan Area, Western Australia. Results: There were 30 participants from twelve aged care facilities (21 residents and nine family caregivers). Five focus groups comprising both residents and family caregivers were conducted in addition to three face‐to‐face interviews with residents. Both groups considered oral health very important to overall health and quality of life. Family caregivers noted a lack of dental check‐ups and specialised professional oral care, particularly in high‐care facilities. Low care residents were more likely to have regular dental check‐ups or dental treatment and off‐site dental visits were straightforward due to their mobility and family member assistance. Family caregivers noted time limitations and lack of expertise in oral health care amongst staff in high‐care facilities, and the challenges of maintaining oral care for residents with poor mobility or cognitive impairment. It was considered important that staff and management liaise with family caregivers and family members in provision of oral care. Conclusion: Regular oral care, assessment and treatment were considered limited, particularly for residents in high care. There is a need for comprehensive, ongoing oral health programmes involving appropriately trained and empathetic dental health professionals and staff to improve oral health care in Perth’s aged care facilities.     

How palliative care patients’ feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.     

Multidisciplinary transmural rehabilitation for older persons with a stroke: the design of a randomised controlled trial

Background

Stroke is one of the major causes of loss of independence, decreased quality of life and mortality among elderly people. About half of the elderly stroke patients discharged after rehabilitation in a nursing home still experience serious impairments in daily functioning one year post stroke, which can lead to difficulties in picking up and managing their social life. The aim of this study is to evaluate the effectiveness and feasibility of a new multidisciplinary transmural rehabilitation programme for older stroke patients.

Methods

A two group multicentre randomised controlled trial is used to evaluate the effects of the rehabilitation programme. The programme consists of three care modules: 1) neurorehabilitation treatment for elderly stroke patients; 2) empowerment training for patient and informal caregiver; and 3) stroke education for patient and informal caregiver. The total programme has a duration of between two and six months, depending on the individual problems of the patient and informal caregiver. The control group receives usual care in the nursing home and after discharge.Patients aged 65 years and over are eligible for study participation when they are admitted to a geriatric rehabilitation unit in a nursing home due to a recent stroke and are expected to be able to return to their original home environment after discharge. Data are gathered by face-to-face interviews, self-administered questionnaires, focus groups and registration forms. Primary outcomes for patients are activity level after stroke, functional dependence, perceived quality of life and social participation. Outcomes for informal caregivers are perceived care burden, objective care burden, quality of life and perceived health. Outcome measures of the process evaluation are implementation fidelity, programme deliverance and the opinion of the stroke professionals, patients and informal caregivers about the programme. Outcome measures of the economic evaluation are the healthcare utilisation and associated costs. Data are collected at baseline, and after six and 12 months. The first results of the study will be expected in 2014.

Trial registration

International Standard Randomised Controlled Trial Register Number ISRCTN62286281, The Dutch Trial Register NTR2412

     

Oral health of institutionalised elderly: a qualitative study of health caregivers’ perceptions in Brazil

doi: 10.1111/j.1741‐2358.2010.00366.x
Oral health of institutionalised elderly: a qualitative study of health caregivers’ perceptions in Brazil Objective: The aim of this study was to qualitatively explore caregivers’ perceptions of oral health care and factors influencing their work in a public long‐term care institution for the elderly in Goiania, Brazil. Method: Data were collected from a sample of 10 caregivers using personal in‐depth interviews and observation. Results: Caregivers were mainly nurses’ aides without training in oral health care. Oral health was associated with access to dental treatment, oral hygiene and use of dentures. Edentulousness, use of inappropriate dentures and appetite loss were perceived as negative images. Procedures used for oral hygiene were toothbrushing, mouth cleaning with a gauze and using a mouthwash. Conflicting priorities in routine care, lack of caregivers’ knowledge and the co‐operation of the elderly were the main obstacles to satisfactory oral care. Conclusion: Oral health care of the elderly was perceived as a burden by caregivers, and did not follow a standard protocol. Caregivers’ knowledge and perceptions reinforce the need for education and training in oral health issues.     

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.     

Multimodal home care intervention for dependent older people “Live better at home”: Protocol of a randomized clinical trial

BackgroundThe intensity of the home care interventions for dependent older people offered in Spain may not be sufficient to help keep older people living at home, being the institutionalization in a nursing home (NH) an unavoidable consequence.ObjectiveTo evaluate the effect of intensification in home care interventions on users with grade II or III dependency, as well as training for their informal caregivers in order to delay or avoid their institutionalization in a NH.MethodsA randomized clinical trial with two parallel arms and blinded assessment will be conducted at the community level in two municipalities in Catalonia (Spain). The study will include those older people (aged 65 and over) living in the community, with degree II or III of dependency, users of the public home care unwilling to be institutionalized and with a main informal caregiver in charge, who will also participate in the study. The assessments will be performed monthly up to 15 months, when the intervention will be finished. The main outcome will be the time until the willingness for admission to a NH. Secondary variables will be composed of sociodemographic, health, psychosocial, resource use, and follow-up variables. A multivariate Cox regression model will be carried out to estimate the effectiveness of the intervention.DiscussionA multimodal home care intervention could improve the health and psychosocial status of dependent people and their informal caregivers and facilitate their permanence at home.Trial registrationNCT05567965     

Zorgzame vrienden en buren als mantelzorgers van oudere volwassenen: een vergelijking met kinderen

This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.     

Symposium De toekomst van de informele zorg

Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium ‘The future of informal care’, organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question. In her inaugural speech Alice de Boer discussed social inequality as possible determinant and outcome of informal care. Some conclusions:Until 2050 the absolute number of 75-plus doubled to about 3 million persons, but the number of informal caregivers will decrease. In addition to the importance of social and economic resources (the ‘have & have-nots’), the ability to arrange care (the ‘can & can-nots’) gains importance.Almost half of the older employers provides informal care just before retirement. Flexibility in working hours and work location facilitates combining work and care, but about half of the employers indicates that partial retirement and working at home are no options.Informal caregivers and professionals often provide care from comparable perspectives and identities. Addressing similarities rather than differences improves their chances for collaboration.The number of adult children providing household care to older parents increased between 2002 and 2014. This suggests an increase in family solidarity, but current reform policies may increase the gender inequality in caregiving families.Spouses and children remain primary caregivers in the future, preferably supported by many different types of caregivers. Not everybody has the capabilities to organize and direct such a large care network.Providing informal care increases the risk for overburden and absence at work or education. Informal caregivers at risk remain, also in the future, women, spouses, migrants, and younger carers.     

Kwaliteit van leven bij dementie

Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers (‘sense of aesthetics’, ‘financial situation’, ‘being useful’ and ‘spirituality’), or not selected in the measuring instruments (‘security and privacy’, ‘self-determination and freedom’, ‘being useful’ and ‘spirituality’). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N=374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains ‘financial situation’ and ‘being useful’. Professionals offering daytime activities focused more than 24-hour care staff on ‘attachment’, ‘enjoyment of activities’, ‘sense of aesthetics’, and ‘being useful’ This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533–558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer’s Disease and Other Dementias 2007; 22:176–183.     

Self‐perceived burden to others as a moral emotion in wishes to die. A conceptual analysis

Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a plight so desperate that it can only be relieved by the end of the patient’s existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient’s mind, and the danger of diminishing the worth of one’s life out of shame or self‐denigration. R. D. Laing’s terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient’s view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver’s view of the patient’s stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable.     

Caregivers' perceptions of electric versus manual toothbrushes for the institutionalised elderly

Objective: To evaluate how caregivers feel about the use of electric vs. manual toothbrushes for the elderly in long‐term care. Materials and methods: After electric toothbrushes had been accessible in an institution for 15 months, a self‐administered questionnaire was distributed to the nursing staff. The questions posed were whether the electric toothbrushes were being used, how much time was spent on brushing and if electric toothbrushes simplified the provision of oral care for the residents. Results: The response rate was 79%. Of the 119 respondents, 78% replied that they always or frequently used an electric toothbrush. With regard to brushing times, 44% of the respondents reported that they spent less time on oral care procedures with an electric toothbrush than with a manual one. Equal amount of time for both types of toothbrushes was reported by 53%. Only 3% reported spending more time with an electric toothbrush than with a manual one. Oral care procedures were considered simpler with this device by 63% of the respondents, 22% registered no change and 15% found it more difficult. If patients suffering from dementia were considered separately, 45% found the procedures simpler when using electric toothbrushes, 24% registered no difference and 31% found it more difficult. Conclusion: The findings indicate that when given the choice, the caregivers prefer to use electric toothbrushes rather than manual ones as they feel this is simpler and often less time‐consuming.     

A burden from birth? Non‐invasive prenatal testing and the stigmatization of people with disabilities

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective.     

Midlife obesity and long-term risk of nursing home admission

Objective: Obesity is a growing problem among middle‐aged individuals. We investigated whether obesity in middle‐aged individuals influences the need for future nursing home care and whether the risk of nursing home admission associated with obesity is greater in whites than in blacks. Research Methods and Procedures: The study population (N = 8804) consisted of long‐term members of the Kaiser Permanente Medical Care Plan ages 75 to 85 years in 1995 who had completed a standardized, multiphasic health checkup while in their 50s. The multiphasic health checkup examinations were performed as part of routine medical care between the years 1964 and 1973 and included standardized measurements of BMI. We used health plan records to assess incident nursing home admissions from 1995 to 2002. The risk of nursing home admission associated with standard categories of midlife BMI was estimated using Cox proportional hazard analysis. Results: During an average follow‐up of 5.1 years, the nursing home admission rate was 6.8 per 100 person‐years of observation. After adjustment for comorbidities, midlife obesity predicted incident nursing home admission ～25 years later [hazard ratio (HR), 1.30; 95% confidence interval (CI), 1.15 to 1.46; p < 0.001]. Overweight BMI at midlife was not associated with future nursing home admission (HR, 1.05; 95% CI, 0.97 to 1.14; p = 0.23). The risk of nursing home admission associated with midlife obesity was higher in whites (HR, 1.34; 95% CI, 1.17 to 1.54; p < 0.001) than in blacks (HR 1.15; 95% CI, 0.87 to 1.52; p = 0.32), but the difference between races was not significant (p for interaction = 0.65). Discussion: Obesity among middle‐aged individuals is associated with an increased risk of nursing home admission in late life and may be an important target for reducing the future societal burden of nursing home care.     

Oral implants in dependent elderly persons: blessing or burden?

doi:10.1111/j.1741‐2358.2009.00314.x
Oral implants in dependent elderly persons: blessing or burden? Background: Implant‐supported (partial) dentures may raise problems in patients who have become dependent on others for daily oral health care. Dental hygienists and general dental practitioners, as well as care providers, volunteer aiders and even health care insurance companies, should anticipate the growing demand for specific oral health care for patients provided with implant‐supported (partial) dentures. Objective: To report three cases of dependent patients and to present recommendations to prevent or resolve implant‐related oral problems. Materials and methods: The three case reports are demonstrating that implant insertion in (dependent) elderly people needs careful consideration. Discussion: When considering implant treatment, some questions should be raised: (1) Is the treatment appropriate in contributing to the patient’s well‐being and quality of life? (2) Is the treatment the most suitable treatment? (3) Does the treatment integrate with the patient’s oral health care plan? (4) Is the patient sufficiently cooperative? (5) Is the patient supported by a well‐functioning oral (self) care assisting network? (6) Is it possible for the patient to regular see an oral health care professional and is oral health care easily accessible in cases of an emergency? Conclusion: Dependent elderly people can benefit from oral implants, providing that adequate oral health care and aftercare can be provided. When indicated, removal of the anchorage structure is easily performed by putting the implants to sleep. All implant patients should be provided with an ‘implant passport’. Regular information and instruction for care providers about the oral condition of the patient are essential.     

Attitudes to and knowledge about oral health care among nursing home personnel--an area in need of improvement

doi: 10.1111/j.1741‐2358.2011.00562.x
Attitudes to and knowledge about oral health care among nursing home personnel – an area in need of improvement Background: In 1999, a dental reform became law in Sweden that regulated both dental care to dependent individuals and training in oral health care for nursing home personnel. Substantial resources have been channelled into these efforts, but the outcome of these efforts has not been evaluated. The aim of this study was to explore attitudes to and knowledge about oral health care among nursing home personnel more than 5 years after the law was adopted, that being 2005. Methods: A total of 454 individuals employed at nursing homes answered a questionnaire of 16 multiple‐choice items concerning attitudes to and knowledge about oral health care. Results: Eighty‐nine per cent considered oral health care to be an important part of good nursing. The answers indicated problems, however, when it came to its implementation and knowledge, and 35% stated that they had had no formal education in oral health care. Conclusions: Despite generally positive oral health care attitudes, it is important that oral health care education is available to and made of interest for all nursing home personnel, especially in light of the increase in number of natural teeth and frequency of crowns and bridges among dependent elderly.