Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

Interventions for residents with dementia and their family and staff caregivers: evaluating the effectiveness of measures of outcomes in long-term care

This article describes six instruments developed for programs of research testing nursing interventions for individuals with dementia in Special Care Units and their family and staff caregivers. The Functional Abilities Checklist measures the functional abilities of residents with dementia. The Family Perceptions of Care Tool assesses family member satisfaction with care of the institutionalized relative with dementia. The Family Perceptions of Caregiving Role instrument evaluates stress experienced by family members of individuals with dementia related to their caregiving roles in long-term care settings. The Caregiver Stress Inventory and Staff Perceptions of Caregiving Role tools measure staff stress related to caring for residents with dementia. Finally, the Attitudes About Families Checklist assesses general staff attitudes about families of residents with dementia. Each instrument and its psychometric properties are described. The advantages of these instruments for research and clinical use with individuals with dementia are discussed.     

Barriers and facilitators in providing oral care to nursing home residents,from the perspective of care aides: A systematic review and meta-analysis

BackgroundOral health of nursing home residents is generally poor, with severe consequences for residents’ general health and quality of life and for the health care system. Care aides in nursing homes provide up to 80% of direct care (including oral care) to residents, but providing oral care is often challenging. Interventions to improve oral care must tailor to identified barriers and facilitators to be effective. This review identifies and synthesizes the evidence on barriers and facilitators care aides perceive in providing oral care to nursing home residents.MethodsWe systematically searched the databases MEDLINE, Embase, Evidence Based Reviews—Cochrane Central Register of Controlled Trials, CINAHL, and Web of Science. We also searched by hand the contents of key journals, publications of key authors, and reference lists of all studies included. We included qualitative and quantitative research studies that assess barriers and facilitators, as perceived by care aides, to providing oral care to nursing home residents. We conducted a thematic analysis of barriers and facilitators, extracted prevalence of care aides reporting certain barriers and facilitators from studies reporting quantitative data, and conducted random-effects meta-analyses of prevalence.ResultsWe included 45 references that represent 41 unique studies: 15 cross-sectional studies, 13 qualitative studies, 7 mixed methods studies, 3 one-group pre-post studies, and 3 randomized controlled trials. Methodological quality was generally weak. We identified barriers and facilitators related to residents, their family members, care providers, organization of care services, and social interactions. Pooled estimates (95% confidence intervals) of barriers were: residents resisting care = 45% (15%–77%); care providers’ lack of knowledge, education or training in providing oral care = 24% (7%–47%); general difficulties in providing oral care = 26% (19%–33%); lack of time = 31% (17%–47%); general dislike of oral care = 19% (8%–33%); and lack of staff = 22% (13%–31%).ConclusionsWe found a lack of robust evidence on barriers and facilitators that care aides perceive in providing oral care to nursing home residents, suggesting a need for robust research studies in this area. Effective strategies to overcome barriers and to increase facilitators in providing oral care are one of the most critical research gaps in the area of improving oral care for nursing home residents. Strategies to prevent or manage residents’ responsive behaviors and to improve care aides’ oral care knowledge are especially needed.     

Improving quality and efficiency in oral hygiene

A large percentage of the residents in long-term care facilities are unable to achieve an acceptable level of oral hygiene due to mental and physical incapacities and must thus rely on nursing staff for daily oral care. Significant morbidity is associated with chronic inadequate oral hygiene. In addition, a lack of self-esteem related to poor dental status has been observed in some nursing home patients, leading to withdrawal from social interaction and personal isolation. The Collis Curve toothbrush removed more plaque than the straight bristle toothbrush. The curved bristle toothbrush was well received by the residents and well accepted by the nursing staff. A clinically significant number of staff reported that the curved bristle toothbrush made their job easier. Monitoring of the nurses' aides' brushing techniques during the study caused them to provide more effective oral hygiene than prior to the study. The importance of proper oral hygiene must be monitored and supported by nursing supervisors, regardless of the type of brush, used to achieve acceptable levels of oral hygiene.     

Family and staff partnerships in long-term care. A review of the literature

Working with the family in aged care to provide the best care possible is consistent with modern nursing philosophy, which espouses holistic care. The quality and enjoyment of the experience, however, is frequently fraught with problems and challenges for both the family and the staff involved. In residential aged care, partnerships are a complex mix of interactions among the older adult resident, the family, and the caregiving staff. To understand how family involvement in this environment can be made more meaningful, nurses need to be cognizant of how family members experience the caregiving role and how they are perceived by nursing home staff and residents. The relevant literature of the past 20 years is reviewed and key issues central to an understanding of "family care" in the nursing home from the perspective of the family, the nursing home resident, and the nursing home staff are highlighted in this article.     

Better care in nursing homes: advanced practice nurses' strategies for improving staff use of protocols

This article describes a set of strategies used by gerontologic advanced practice nurses (GAPNs) in three nursing homes to integrate the use of protocols into the daily care of residents. The protocols were developed as part of a larger study on the quality of care in nursing homes carried out by nurse researchers at the University of Minnesota and funded by the National Institute of Nursing Research (R01-NR03490). The GAPNs worked regularly with nursing home staff to incorporate aspects of protocols into daily care routines for residents with four specific problems common in elderly residents of nursing homes: pressure ulcers, incontinence, depression, and aggressive behavior. Outcomes of the larger study showed that residents with these four problems had better outcomes in the homes in which care was planned by the GAPNs using protocols that were integrated into the daily routines of staff.     

Oral hygiene care for residents with dementia: a literature review

AIM: This paper presents a literature review of oral hygiene care for adults with dementia in residential aged care facilities, including evidence for: (1) prevalence, incidence, experiences and increments of oral diseases; (2) use of assessment tools to evaluate residents' oral health; (3) preventive oral hygiene care strategies; and (4) provision of dental treatment. BACKGROUND: The impact of dementia on residential care is ever-increasing and regular oral hygiene care provision is challenging for cognitively impaired residents. Although an abundance of oral hygiene care recommendations for older people have been published, the supporting evidence has not been clearly delineated. METHODS: A review was conducted of English language publications (1980-2002), using a two-step approach (keyword electronic database search, supplemented with secondary search of cited references). All 306 selected articles were critically reviewed and systematically categorized. RESULTS: Evidence confirmed clinicians' observations of poor oral health in older residents with dementia. Possible risk factors identified were: salivary dysfunction, polypharmacy, medical conditions, swallowing and dietary problems, functional dependence, oral hygiene care assistance and poor use of dental care. One comprehensive, reliable and validated oral assessment screening tool for residents with dementia had been published. Expert opinion indicated that oral assessment screening by staff and a dentist would be ideal at admission and regularly thereafter. Clinicians and researchers suggested that oral hygiene care strategies were effective in preventing oral diseases and appropriate for residents with dementia. CONCLUSION: These literature review findings supported the use of oral assessment screening tools by staff and efficacious preventive oral hygiene care strategies/products for adults with dementia in residential care facilities. Further research with this population is needed to develop and validate oral assessment tools and staff education programmes, trial preventive oral hygiene care strategies/products and trial dementia-focused behaviour management and communication strategies.     

Nursing home staff attitudes towards residents with dementia: strain and satisfaction with work

BACKGROUND: Occupational and resident characteristics affect levels of staff stress and satisfaction in nursing homes, and levels of staff turnover are high. Working with more cognitively impaired residents, especially on day shift, is associated with high levels of stress in nursing home staff. Workload is highly predictive of the experience of burden and job pressure, while these outcomes vary according to whether staff work full- or part-time. AIMS: To investigate the attitudes of nursing home staff towards residents, strain related to dementia care and satisfaction with work and their associations with demographic, occupational and behavioural disturbance in the home. METHODS: A cross-sectional design was adopted, using a self-completion questionnaire survey of 253 nursing home staff from 12 nursing homes in Sydney's eastern suburbs, and behavioural assessment of all 647 residents from 11 of the 12 homes. Staff attitudes and strain were measured using the Swedish Strain in Nursing Care Assessment Scale and satisfaction using the Swedish Satisfaction with Nursing Care and Work Assessment Scale. RESULTS: Staff members' five most prevalent perceptions of residents with dementia were that they are anxious, have little control over their difficult behaviour, are unpredictable, lonely and frightened/vulnerable. The five attributes staff found most difficult to cope with were being aggressive/hostile, having little control over their difficult behaviour, being stubborn/resistive, deliberately difficult, and unpredictable. Although 91% of staff reported that they were happy in their job, a quarter reported that residents provided no job satisfaction. The five satisfaction statements most agreed with were "The patients/residents at work nearly always receive good care", "It is important to try and enter into the way patients experience what happens to them", "Relatives are given enough information about care and treatment", "I enjoy my current work situation" and "Our work organisation is good". There were significant differences between homes in levels of strain related to dementia care that were not accounted for by the level of behavioural disturbance. CONCLUSIONS: Nursing home staff tended to perceive residents in more negative than positive ways. Staff were generally satisfied with their work. Factors other than resident behavioural disturbance are important influences in nursing staff strain.     

Work related predictors for "satisfaction with dementia care" among nurses working in nursing homes

In German nursing homes dementia care is gaining increasing relevance. Dementia care is known to bear the high risk of a substantial occupational burden among nursing staff. Within this context, the "nurses' satisfaction with the care for residents with dementia" is investigated. Secondary data of the German 3q-study is used to assess degrees of nurses' satisfaction with the care for residents with dementia and potential work related predictors. Data from 813 nurses and nursing aides working in 53 nursing homes were included. 42% of all nursing staff was dissatisfied with the care for residents with dementia in their institution, however, pronounced differences were found between the institutions. Registered nurses and nurses in leading positions were more dissatisfied. A multiple regression analysis indicates that high "quantitative demands", low "leadership quality" and "social interaction with other professions" are strong predictors for nurses' satisfaction with the care for residents with dementia. No association was found for "emotional demands" and "possibilities for development". The results indicate that the "nurses" satisfaction with the care for residents with dementia" may be a highly relevant work factor for nursing staff in nursing homes which deserves additional attention in practice and research. The high predictive power of several work organisational factors implies that preventive action should also include work organisational factors.     

Usefulness,feasibility and face validity of the interRAI Palliative Care instrument according to care professionals in nursing homes: A qualitative study

BackgroundNursing homes are important locations for palliative care. High quality palliative care requires an evaluation of the different care needs of the nursing home residents. The interRAI Palliative Care instrument is a comprehensive assessment that evaluates the needs and preferences of adults receiving palliative care.ObjectivesThis study aims to evaluate the usefulness, feasibility and face validity of the interRAI Palliative Care instrument.DesignA qualitative study was conducted, based on the abductive reasoning approach.SettingFifteen nursing homes in Flanders (Belgium).ParticipantsCalls for participation were sent out by four umbrella organizations of Flemish nursing homes (Belgium) and at a national conference for nursing home staff. Nineteen care professionals (nurses, certified nursing assistants, psychologists, physiotherapists, quality coordinators and directors) of 15 nursing homes voluntarily agreed to participate in the study.MethodsDuring one year, care professionals evaluated the needs and preferences of all nursing home residents receiving palliative care by means of the interRAI Palliative Care instrument. Data on the usefulness, feasibility and face validity of the interRAI Palliative Care instrument were derived from notes, semi-structured interviews and focus groups with participating care professionals and were thematically analyzed and synthesized. Data were gathered between December 2013 and March 2015.ResultsIn general, the interRAI Palliative Care (interRAI PC instrument) is a useful instrument according to care professionals in nursing homes. However, care professionals made a series of recommendations in order to optimize the usefulness of the instrument. The interRAI PC instrument is not always feasible to complete because of organizational reasons. Furthermore, the face validity of the instrument could be improved since certain items are incomplete, lacking, redundant or too complex.ConclusionsFindings highlight the importance of adapting the content of the interRAI Palliative Care instrument for use in nursing homes. Furthermore, the use of the instrument should be integrated in the organization of daily care routines in the nursing homes. Tackling the critical remarks of care professionals will help to optimize the interRAI Palliative Care instrument and hence support palliative care of high quality in nursing homes.     

Does nurses' vulnerability affect their ability to care?

Recent reports from the Department of Health (2008), the Parliamentary and Health Service Ombudsman (2011) and the Commission on Dignity in Care for Older People (2012) have been highly critical regarding the care that some patients have experienced. They have highlighted that fundamental aspects of care are missing resulting in a lack of high quality individualised nursing care, which is in contrast with holistic nursing philosophy. We have to ask ourselves what is happening within nursing, as many enter the profession owing to a desire to 'make a difference'. Drawing on focus group data exploring perceptions of caring for residents with dementia in a care home setting, the authors found that nurses and healthcare assistants experience a mutual vulnerability with patients. This paper explores whether this mutual vulnerability could lead to nurses focusing on the clinical aspects of their role to the detriment of the compassionate, caring components of nursing.     

Institutionalized elders with dementia: collaboration between family caregivers and nursing home staff in Taiwan

Aims and objectives. To explore the process of development of collaborative relationship between family caregivers of institutionalized elders with dementia and nursing home staff in Taiwan. Background. Evidence suggests that family members are continuously involved in the lives of loved ones and have not given up their roles as caregivers after the institutionalization of a family member. Little is known, however, about how family caregivers develop a collaborative relationship with nursing home staff, particularly in Asian countries. Design and methods. Grounded theory methodology was used. Data were collected via interviews and observations from 11 family caregivers of patients who were suffering from dementia and living in an institution for persons with dementia in northern Taiwan. Data were analysed by constant comparative analysis. Results. Findings revealed that ‘institutional social penetration’ was the process most used by family caregivers to achieve an harmonious collaborative relationship with the nursing home staff. Institutional social penetration is a dynamic process, which includes three components: self‐disclosure, evaluation of care and penetration strategies. Family caregivers, who had developed a ‘socially penetrating’ relationship with the nursing home staff, were more likely to disclose information in more breadth and depth, to receive positive care evaluations and to adopt multiple effective penetration strategies. Conclusions. Institutional social penetration between family caregivers and nursing home staff can sensitize healthcare providers to meet the family's needs during the placement of their loved one and provide a basis for developing intervention strategies. Relevance to clinical practice. Findings of this study may help healthcare providers to understand the ways in which collaborative relationships develop between the families of elders with dementia and nursing home staff. Interventions can be developed to facilitate self‐disclosure of both the family members and nursing home staff through timely feedback and familiarising family caregivers with different penetration strategies.     

Certified nursing assistants' perspectives of the CARES® activities of daily living dementia care program

BackgroundThere has been a proliferation of online training programs for nursing home direct care staff related to dementia care, yet little is known about the effectiveness of the training. Some evidence exists that online training is effective in addressing problem behaviors of nursing home residents with dementia by enhancing self-efficacy, improving attitudes, and increasing knowledge of nursing home staff.Study aimThe current study aim was to evaluate the implementation of an online training program consisting of ten, one-hour modules which applies the CARES® concepts and learning framework to activities of daily living (ADL) care for persons with dementia.MethodsResponses from Likert-type items, and open-ended questions were analyzed in a sample of 48 certified nursing assistants (CNAs) from 10 nursing homes in six states (ME, MT, ND, WI, MN, MO) that were part of a National Institute of Aging funded intervention study (Grant #AG026210).ResultsThe mixed-method study findings indicated that CNAs gained a better understanding, more knowledge, and more confidence in caring for persons with dementia. Recommendations were made regarding training length and technical issues, and some questioned the practicality of providing person-centered care when resident assignment was very high. CNAs expressed satisfaction with the online training, found it easy to use, and many said they would recommend the training. CARES® ADL Dementia Care online training appears to be a viable way of helping CNAs address the personal care needs of long-term care residents. Future CARES® ADL Dementia Care program research should include more racially diverse CNAs.     

“Behind Closed Doors with open minds?”: A qualitative study exploring nursing home staff’s narratives towards their roles and duties within the context of sexuality in dementia

BackgroundDespite sexual expression being recognised as a fundamental human need, sexuality in old age is often ignored and frequently misunderstood, with residents with dementia in a nursing home often viewed as asexual or incapable of being sexually active.ObjectivesThe current study aims to understand the views held by nursing care home staff towards dementia and sexuality and explore the roles they may adopt whilst responding and managing sexual needs and expression for residents with dementia.MethodsFace to face, in-depth, semi structured interviews were conducted with eight staff members working in two nursing homes in Greater London, United Kingdom. Data were analysed using Interpretative Phenomenological Analysis.ResultsThe findings suggest that representations of sexuality in dementia held by nursing home staff ranged from the perception that sexual expression in old age was part of human nature and a basic human right to others that proposed that with the loss of memory, people with dementia may also experience loss of interest in sexuality and intimacy. Based on the representation of sexuality held (personhood versus biomedical model), nursing home staff adopted a role or a combination of roles (a facilitator, an informant, a distractor, an empathiser, a safeguarder) that legitimised past and anticipated responses in managing sexual expression in the nursing home setting. Nursing home staff’s responses varied depending on the severity of the condition, level of involvement of the resident’s family and their own personal views on their duty of care, old age, sexuality and dementia.ConclusionThe simplified binary labelling and classification of sexual behaviour in dementia as appropriate or inappropriate often applied in institutional settings, fails to account for complex factors that may influence staff’s decisions on the ethical dilemmas raised by dementia. A role based continuum approach could help staff move away from rigid binary judgments and train them to adopt formal carer roles that promote a more contextualised rights based approach in the provision of dementia care.     

Improvement of oral health care in geriatric care by training of nurses and nursing assistants for the elderly

Because oral health among residents of German nursing homes is inadequate, this intervention study evaluated the effects of dental training for nurses and nursing assistants (RN and RA) in homes for the elderly on their assessment of oral health in residents and, as a consequence, on the status of residents' oral health. 53 residents and the RNs and RAs from three homes for the elderly participated in this study. The nursing staff received training in dental health care. As primary outcome, the competence in performing the Brief Oral Health Examination (BOHSE) was measured at baseline date and four months after training. Additional outcome measures were dental and denture hygiene in residents, functional status of dentures, and treatment needs. Dental training was shown to improve the nursing staff's competences in oral health assessment in tendency. Residents' oral hygiene improved significantly, whereas no relevant effects on hygiene and functional status of dentures were registered. The need for dental treatment turned out to be considerable at both measurements. Modifications in test tools with identification of dental treatment needs seem to be indicated in order to improve cooperation between nursing staff and dentists in homes for the elderly.     

Long-term care nurses' knowledge of end-of-life care

Long-term care (LTC) facilities usually contract with hospice agencies to provide palliative (comfort) care to their terminally ill residents, yet only 1% of nursing home residents enroll in hospice care. Integrating hospice services with nursing home services presents many challenges. One of the most critical challenges is the lack of education in palliative care among physicians, licensed nurses, and certified nursing assistants in LTC settings. A study of 164 licensed nurses from 24 LTC facilities in north central Texas found deficiencies in their knowledge of palliative care. The mean score on the Palliative Care Quiz for Nursing was 12.3 of a possible 20 (62%, SD = 2.7). Implications for practice include a critical need for in-service education on end-of-life content for practicing LTC nurses and integration of such content in all curricula for future nurses.     

Family and staff perceptions of the role of families in nursing homes

Family and staff perceptions of the role of families in nursing homes Admission to a nursing home is generally regarded as the termination of family care and the commencement of institutional care. Research suggests that following placement families are often expected to relinquish their dependent older relative to the bureaucracy of the institution. The aim of this study was to investigate family and nursing home staff perceptions of the role of families caring for residents in nursing homes. A convenience sample of 44 family carers and 78 nursing home staff completed questionnaires, and interviews were conducted with 10 family carers and 10 nursing home staff. The results suggest that family carers perceived themselves to have a greater role in caring for relatives than that perceived by the nursing home staff. Either families overestimated their involvement, or staff underestimated family involvement in caring for residents in nursing homes. Families were mostly satisfied with their role and with the care provided in nursing homes. They perceived nurses as providers of technical care and they perceived themselves as having an important role in providing social and emotional care. Families trusted the clinical judgement of the staff but the staff were reluctant to trust family carers, especially in situations where care involved an element of risk. Family roles were limited by members' own ability to care and the dependency of the resident, while professional responsibility and accountability discouraged nurses from sharing some caring roles. The results indicate that families in this study were more willing to help in nursing home care and were perhaps under-valued as a resource within the nursing home setting.