Exploring the lived experience: impact of dementia diagnosis on individuals with cognitive impairment - a qualitative study.

OBJECTIVE: Although knowledge about the experience of being diagnosed with dementia is limited, with the expected rise in dementia's prevalence in the coming decades, such knowledge is pivotal for the people diagnosed, their families, and healthcare planners. Thus, the aim of our study was to explore the experience of living with cognitive impairment and dementia and the impact of being diagnosed with dementia. METHOD: A qualitative design was applied. Participants were recruited based on age-adjusted values below ​​threshold values on the Montreal Cognitive Assessment Scale (i.e. 70-79 years, < 22; 80-89 years, < 21; 90 + years, < 20), and the sample ultimately included 15 participants: six with and nine without a documented dementia diagnosis. Qualitative content analysis was performed on the transcribed interviews in four steps to identify codes, categories, and the overall theme. RESULTS: Three major categories emerged from the interviews: (1) experiences with changes, (2) experiences with being diagnosed with dementia, and (3) existential experience. All participants with and most participants without a dementia diagnosis experienced changes in cognition. CONCLUSION: Our findings imply that being diagnosed with dementia is a relief because it explains observed cognitive and functional decreases and reduces confusion, shame and stigma. However, it also raises concerns about an unknown future. Most participants not diagnosed with dementia reported having little or no difficulty with everyday living and leading a fulfilling life. Those findings emphasise the significance of timely versus early diagnosis.

A longitudinal cohort study on the use of health and care services by older adults living at home with/without dementia before and during the COVID-19 pandemic: the HUNT study.

BACKGROUND: Older adults and people with dementia were anticipated to be particularly unable to use health and care services during the lockdown period following the COVID-19 pandemic. To better prepare for future pandemics, we aimed to investigate whether the use of health and care services changed during the pandemic and whether those at older ages and/or dementia experienced a higher degree of change than that observed by their counterparts. METHODS: Data from the Norwegian Trøndelag Health Study (HUNT4 70 + , 2017-2019) were linked to two national health registries that have individual-level data on the use of primary and specialist health and care services. A multilevel mixed-effects linear regression model was used to calculate changes in the use of services from 18 months before the lockdown, (12 March 2020) to 18 months after the lockdown. RESULTS: The study sample included 10,607 participants, 54% were women and 11% had dementia. The mean age was 76 years (SD: 5.7, range: 68-102 years). A decrease in primary health and care service use, except for contact with general practitioners (GPs), was observed during the lockdown period for people with dementia (p < 0.001) and those aged ≥ 80 years without dementia (p = 0.006), compared to the 6-month period before the lockdown. The use of specialist health services decreased during the lockdown period for all groups (p ≤ 0.011), except for those aged < 80 years with dementia. Service use reached levels comparable to pre-pandemic data within one year after the lockdown. CONCLUSION: Older adults experienced an immediate reduction in the use of health and care services, other than GP contacts, during the first wave of the COVID-19 pandemic. Within primary care services, people with dementia demonstrated a more pronounced reduction than that observed in people without dementia; otherwise, the variations related to age and dementia status were small. Both groups returned to services levels similar to those during the pre-pandemic period within one year after the lockdown. The increase in GP contacts may indicate a need to reallocate resources to primary health services during future pandemics. TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov, with the identification number NCT04792086.

Norwegian nurses' perceptions of assisted dying requests from terminally ill patients-A qualitative interview study.

This study explores the perceptions of Norwegian nurses who have received assisted dying requests from terminally ill patients. Assisted dying is illegal in Norway, while in some countries, it is an option. Nurses caring for terminally ill patients may experience ethical challenges by receiving requests for euthanasia and assisted suicide. We applied a qualitative research design with a phenomenological hermeneutic approach using open individual interviews. A total of 15 registered nurses employed in pulmonary and oncology wards of three university hospitals and home care in one municipality were recruited. Four themes emerged from the analysis: (1) unprepared for the request; (2) meeting direct, indirect, and nonverbal requests; (3) working in a gray zone, and (4) feeling alone and powerless. The study found that nurses were unsure how to handle such requests due to professional uncertainty about assisted dying. Working in an environment where the topic is taboo made nurses morally uncertain, and some perceived this as moral distress. The hospital chaplain played a significant role in providing support to these nurses.

Fun and a meaningful routine: the experience of physical activity in people with dementia.

BACKGROUND: Physical activity is important to health and wellbeing. People with dementia are less physically active than their cognitively healthy counterparts. Reasons for this are multifaceted, and are thought to be social, psychological, and physiological. People with dementia often use services such as home care, day care centres and nursing home, and according to the stage of disease they are less or more dependent on other people to take part in activities. To develop appropriate services to this patient group, their needs and preferences regarding physical activity must be recognized. The aim of the study was therefore to provide insight into experiences with physical activity in people with dementia. METHODS: The current study is part of a larger research project on needs in people with dementia. The main project included qualitative semi-structured interviews with 35 persons with dementia. 27 of the participants talked about their experience with physical activity. In the current study, the relevant findings on this theme were analysed separately. A phenomenological hermeneutic research design was applied. RESULTS: The analysis revealed three main categories regarding experiences with physical activity. To be physically active provided positive experiences such as feelings of mastering and post-exercise euphoria. To be physically active was meaningful. The daily walk was an important routine to many, and it gave meaningful content to the day. Keeping up with activities confirmed identity. Lastly, to be active was perceived as challenging. Participants described different barriers to being physically active such as a decline of physical function, lack of motivation and being dependent on others to go out. CONCLUSIONS: Many of the participants expressed that being physically active was important to them. It is essential that informal and formal carers are aware of the role physical activity plays in the lives of many people with dementia, so that appropriate measures can be taken to assure continued active living in order to preserve health and quality of life.

Public knowledge about dementia risk reduction in Norway.

BACKGROUND: Several modifiable lifestyle risk factors for dementia have been identified, but it is unclear how much the Norwegian public knows about the relationship between lifestyle and brain health. Therefore, this study aimed to investigate knowledge about modifiable dementia risk and protective factors and beliefs and attitudes towards dementia and dementia risk reduction in a randomly selected subsample of the Norwegian population. METHODS: The total sample (n = 1435) included individuals aged 40-70 years from four counties (Oslo, Innlandet, Nordland and Trøndelag) in Norway. Two online questionnaires were used to measure (1) awareness about dementia risk reduction and (2) an individual`s motivation to change behaviour for dementia risk reduction (MOCHAD-10). RESULTS: Of the participants, 70% were aware of the potential of dementia risk reduction in general. Physical inactivity (86%), cognitive inactivity (84%) and social isolation (80%) were the most frequently recognised dementia risk factors. On the other hand, diabetes (26%), coronary heart disease (19%), hearing loss (18%) and chronic kidney disease (7%) were less often recognised as dementia risk factors. Comparing men and women, the only significant difference was that women were more likely to report parents with dementia as a risk factor compared to men. Gender, age and educational differences were seen in beliefs and attitudes towards dementia prevention:women reported more negative feelings and attitudes towards dementia than men;those aged 40-49 years - more likely than older age groups - reported that 'knowing family members with dementia' or 'having risk factors' made them believe they had to change their lifestyle and behaviour. CONCLUSIONS: The results indicate that 70% of the Norwegian public are aware of the potential for dementia risk reduction in general. However, there are major gaps in existing knowledge, particularly for cardiovascular risk factors such as hypertension, coronary heart disease, hypercholesterolemia and metabolic factors (diabetes, obesity). These findings underline the importance of further informing the Norwegian public about lifestyle-related risk and protective factors of dementia. Differences in beliefs and attitudes towards dementia risk prevention by age, gender and education require tailored public risk reduction interventions.

Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) in home care services: a cluster randomized feasibility trial.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) occur frequently in people with dementia and can contribute to an increased need for help and a reduced quality of life, but also predict early institutionalization. The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) might be a useful personalized approach to BPSD in people with dementia. The main objective of this feasibility trial was to explore the trial design and methods along with the patients' and the home care staff's acceptance of the TIME intervention before developing a definitive trial. Additionally, we wanted to explore whether TIME could be appropriate for staff in home care services in their approach towards people with dementia with anxiety and depression. METHODS: This was a 18-month feasibility trial using a parallel cluster randomized controlled design. Nine municipalities from the eastern part of Norway (clusters) - 40 people with dementia and 37 of their next of kin- were randomized to the TIME intervention or to treatment as usual. In addition, qualitative data as field notes were collected and summarized. RESULTS: The staff in home care services experienced TIME as an appropriate method; in particular, the systematic approach to the patient's BPSD was experienced as useful. However, the completion of the assessment phase was considered exhaustive and time-consuming, and some of the staff found it challenging to find time for the case conferences. CONCLUSIONS: We consider that TIME, with some adjustments, could be useful for staff in home care services in cases where they face challenges in providing care and support to people with dementia. This feasibility trial indicates that we can move forward with a future definitive randomized controlled trial (RCT) to test the effect of TIME in people with dementia receiving home care services. TRIAL REGISTRATION: ClinicalTrial.gov identifier: SI0303150608.

The facilitation of user-involvement for people with dementia as experienced by health care professionals: A qualitative study using focus groups.

OBJECTIVE: The main objective of this study was to explore how health care professionals experience adaptation of user-involvement for people with dementia receiving health and social care. METHOD: A qualitative explorative design was used with eight focus groups as the method of data collection. A total of 49 health care professionals were included representing a variety of professions, municipal and specialized health services, and all health regions of Norway. The transcribed focus group interviews were analyzed using qualitative content analysis following six steps to identify categories and the overall theme. RESULTS: Six main categories were identified: 1) facilitation of self-determination, 2) challenges of reduced or lack of awareness, 3) family caregivers' concern and protection, 4) open communication, 5) establishing a trustworthy relationship, and 6) clarifying expectations. To maintain independent lives for people with dementia, health care professionals must facilitate and support shared decision-making using an open and trustworthy communication. CONCLUSION: To facilitate user-involvement, health care professionals need to develop and implement strategies that consider the perspectives of people with dementia and support the relationship between people with dementia and their informal caregivers.

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia - a qualitative study.

BACKGROUND: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. METHODS: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. RESULTS: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. CONCLUSIONS: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

Person-centered dementia care in home care services - highly recommended but still challenging to obtain: a qualitative interview study.

BACKGROUND: Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. METHODS: We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. RESULTS: The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: "It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff." CONCLUSION: The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

Limited Benefit of Marine Protein Hydrolysate on Physical Function and Strength in Older Adults: A Randomized Controlled Trial.

Age-related muscle wasting can compromise functional abilities of the elderly. Protein intake stimulates muscle protein synthesis; however, ageing muscle is more resistant to stimuli. This double-blinded, randomized, controlled trial is one of the first registered studies to evaluate the effects of a supplement of marine protein hydrolysate (MPH) on measures of physical function and strength. Eighty-six older adults received nutritional supplements containing 3 g of MPH or a placebo for up to 12 months. Short Physical Performance Battery (SPPB), grip strength and gait speed were measured, and dietary intake was registered at baseline, 6 months, and 12 months. No difference was found between the intervention and control groups in mean change in SPPB (independent sample t-test, p = 0.41) or regarding time trend in SPPB, grip strength, or gait speed (linear mixed model). The participants in our study were well functioning, causing a ceiling effect in SPPB. Further, they had sufficient protein intake and were physically active. Differences in physical function between those completing the intervention and the dropouts might also have created bias in the results. We recommend that future studies of MPH be carried out on a more frail or malnourished population.

What are the needs of people with dementia in acute hospital settings, and what interventions are made to meet these needs? A systematic integrative review of the literature.

BACKGROUND: Research aiming to improve the hospital experience for patients with dementia and their informal carers is strongly recommended. The present review aimed to describe the research on interventions to meet the needs of people with dementia in acute hospital settings regarding physical environment, organization of care, and staff knowledge of dementia and competence in person-centred care. An integrative review design was applied. We searched for studies in PubMed, Ovid Medline, Cinahl, Embase, Swemed+, and Cochrane databases using the Mixed Methods Appraisal Tool (MMAT) for quality evaluation. Twenty-seven articles were included, describing the perspectives of people with dementia, informal carers, and professional carers. The MMAT score ranged from two to four. Twelve studies described needs and experiences, mostly using a qualitative design. Common themes and results were synthesized. The studies identified a need to enhance staff competence regarding dementia and person-centred care. Fifteen studies described interventions: two were qualitative; three used mixed method, and 10 were quantitative, of which two were randomized controlled trials and eight were observational studies. Five types of interventions were identified. Three types could positively impact staff knowledge about dementia and person-centred care. One type was experienced as positive regarding organisation of care for patients with dementia. None of the intervention studies found evidence for effects on the identified needs regarding physical environment. CONCLUSION: The included studies suggest that staff need more knowledge regarding dementia and person-centred dementia care and that training interventions implemented to enhance staff competence had promising results. However, there is a need for research on the needs of patients with dementia in acute hospital settings regarding physical environment and effect of design elements. There is also a scarcity of intervention studies focusing on the effect of models of care that support the psychosocial needs of patients with dementia.

Applicability of the locus of control of behaviour scale for people with dementia.

OBJECTIVE: To investigate the applicability of the Locus of Control of Behaviour scale (LoCB) for people with dementia. METHOD: A sample of 534 participants with dementia (78.4 mean age, 58% female) were included. Assessment included the LoCB, the Montgomery-Aasberg Depression Rating Scale (MADRS), the Mini-Mental Status Examination Norwegian revised (MMSE-NR) and the Instrumental Activities of Daily Living (I-ADL). Completion percentages and internal reliability of LoCB were examined for predefined MMSE-NR groups (0-4, 5-9, 10-14, 15-19, 20-24, 25-27, and 28-30). Factors associated with completion were analysed, and a principal component analysis (PCA) of the LoCB was performed. Sum score and component subscale scores were compared to MADRS and MMSE-NR scores. RESULTS: In total, 234 participants completed the LoCB. Completion percentages ranged from 74% (MMSE-NR 28-30) to 0% (MMSE-NR 0-9). Internal reliability was between 0.80 and 0.72 in groups with MMSE-NR > 9, except in MMSE-NR 20-24 (0.52). Age, MMSE-NR and education were associated with completion. The PCA yielded three components - powerful others, internal, and luck/fate - with explained variance of 41.3%. Participants with MADRS > 7 scored higher on the LoCB sum score, powerful others and internal subscale scores. No difference was found regarding the luck/fate subscale score. MMSE-NR did not affect LoCB scores. CONCLUSION: Older age, less education, and more cognitive impairment decreased the likelihood of completion. However, psychometric test results indicate that those who completed the LoCB understood the questions, even with severe cognitive impairment. We conclude, therefore, that the LoCB is applicable for investigating control orientation among people with dementia.

TIME to reduce agitation in persons with dementia in nursing homes. A process evaluation of a complex intervention.

BACKGROUND: The Targeted Intervention Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) has recently in a three-month cluster randomised controlled trial demonstrated reduction in agitation in nursing home residents with dementia. To ease replication and future implementation, and to clarify possible causal mechanisms, we performed a process evaluation of the intervention based on the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance). METHODS: An exploratory and a quasi-experimental design with mixed methods were used. The RE-AIM dimensions were explored by questionnaires to 807 staff members and 46 leading ward nurses in both the intervention nursing homes (INH) and the control nursing homes (CNH), before the start of the trial (baseline), and six and 12 months later. These questionnaires assessed data regarding the reach, effectiveness (staff level) and adoption dimensions. To assess implementation, we used a checklist for performance of the main components in TIME and analysed the minutes from 84 case conferences in the INH. To explore adoption and maintenance, five focus group interviews with 32 participants from the staff in the INH were conducted three to 6 months after the end of the trial. RESULTS: Reach: On average 61% (SD 22) of the staff in each ward in the INH attended the training sessions. Effectiveness at staff level: There were no between-group differences throughout the study period for attitudes towards dementia, perceived competence or perception of mastery and social interaction. Adoption: 16 of the 17 INH completed the intervention. IMPLEMENTATION: 75% or more of the components of TIME were performed for 91% of the included residents. Maintenance: Most of the nursing homes used TIME three to 6 months after the end of the trial. An easy to grasp model and an engaged leadership facilitated the intervention and maintenance. CONCLUSIONS: A high degree of reach, adoption, implementation and maintenance contributed to the effectiveness of TIME at resident level. One other causal assumption of the effectiveness of TIME is the development in the staff of a new, shared and situated knowledge about each individual resident, not reflected by measurements in general knowledge and attitudes. TRIAL REGISTRATION: The trial was registered January 6, 2016 with ClinicalTrials.gov ( NCT02655003 ).

Experiences of nursing home staff using the targeted interdisciplinary model for evaluation and treatment of neuropsychiatric symptoms (TIME) - a qualitative study.

Background/Aims: Neuropsychiatric symptoms (NPS) in dementia pose great challenges for residents and staff in nursing homes. The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) has recently in a randomized controlled trial demonstrated reductions in NPS. We explored the participating staff's experiences with the model and how it meets the challenges when dealing with the complexity of NPS. Methods: Three to six months after the end of the intervention, we interviewed 32 of the caregivers, leaders, and physicians participating in the trial, in five focus groups. We used thematic content analysis. Results: The analysis yielded two main themes: (1) a systematic reflection method enhanced learning at work; (2) the structure of the approach helped staff to cope with NPS in residents with dementia. Conclusion: TIME shifts the way of learning for the staff from a traditional to a more innovative and reflection-based learning through a process of learning how to learn at work. The staff's experienced increased coping in their approach to complex problems. Our results emphasise the importance of a structured and biopsychosocial approach to NPS in clinical practice. Future research should explore models for integrating situated learning in daily routines in nursing homes.

Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms: A Cluster Randomized Controlled Trial.

OBJECTIVE: To determine the effectiveness of the Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) for treatment of moderate to severe agitation in people with dementia. METHODS: In a single-blinded, cluster randomized controlled trial in 33 nursing homes (clusters) from 20 municipalities in Norway, 229 patients (104 patients in 17 nursing homes and 125 patients in 16 nursing homes) were randomized to an intervention or control group, respectively. The intervention group received TIME, and the control group received a brief education-only intervention. TIME is an interdisciplinary multicomponent intervention and consists of a comprehensive assessment of the patient with the goal to create and put into action a tailored treatment plan. The primary outcome was the between-group difference in change at the agitation/aggression item of the Neuropsychiatric Inventory Nursing Home version between baseline and 8 weeks. Secondary outcomes were the between-group difference in change at the agitation/aggression between baseline and 12 weeks in other neuropsychiatric symptoms, quality of life, and use of psychotropic and analgesic medications between baseline and 8 and 12 weeks. RESULTS: A significant between-group difference in reduction of agitation at both 8 weeks (1.1; 95% confidence interval: 0.1-2.1; p = 0.03) and 12 weeks (1.6; 95% confidence interval: 0.6-2.7; p = 0.002) in favor of the TIME intervention was found. CONCLUSION: The implementation of TIME resulted in a significant reduction of agitation among nursing homes patients with dementia. These results should inform training programs for care staff in Norway and internationally.

The impact of attending day care designed for home-dwelling people with dementia on nursing home admission: a 24-month controlled study.

BACKGROUND: Day care services offer meaningful activities, a safe environment for attendees and respite for family caregivers while being expected to delay the need for nursing home (NH) admission. However, previous research has shown inconsistent results regarding postponement of NH admission. The objective of the study was to explore the influence of a day care programme designed for home-dwelling people with dementia on NH admission. METHOD: A quasi-experimental trial explored the proportion of patients permanently admitted to nursing homes after 24 months as the main outcome by comparing a group of day care attendees (DG) and a group of participants without day care (CG). In all, 257 participants were included (181 in DG and 76 in CG). A logistic regression model was developed with NH admission as the outcome. Participant group (DG or CG) was the main predictor, baseline patient and family caregiver characteristics and interactions were used as covariates. RESULTS: The mean age of participants was 81.5 (SD 6.4), 65% were women and 53% lived alone. The mean MMSE score was 20.4 (SD 3.5). In all, 128 (50%) of the participants were admitted to a nursing home by the 24-month follow-up, 63 participants (25%) completed the follow-up assessment and 66 (26%) dropped out due to death (8%) and other reasons (18%). In the logistic unadjusted regression model for NH admission after 24 months, participant group (DG or CG) was not found to be a significant predictor of NH admission. The results from the adjusted model revealed that the participant group was associated with NH admission through the interactions with age, living conditions, affective symptoms, sleep symptoms and practical functioning, showing a higher probability for NH admission in DG compared to CG. CONCLUSION: The study reveals no evidence to confirm that day care services designed for people with dementia postpone the need for NH admission. Admission to nursing homes seems to be based on a complex mix of personal and functional characteristics both in the person with dementia and the family caregivers. The findings should be considered in accordance with the limitation of inadequate power and the high drop-out rate. TRIAL REGISTRATION: The study is registered in Clinical Trials ( NCT01943071 ).

Experiences of attending day care services designed for people with dementia - a qualitative study with individual interviews.

OBJECTIVES: Day care is assumed to promote independence in home-dwelling people with dementia, increase well-being and enhance social stimulation. Few studies have directly engaged people with dementia to better understand the benefits and impacts of such services. The aim of this study was to explore attendees' experiences with day care designed for people with dementia. METHOD: This study had a qualitative descriptive design and included individual interviews with 17 users attending day care. The analysis was undertaken using content analyses. RESULTS: The participants reported that day care had a positive influence on their physical functioning, cognition, well-being, and situation at home because they were provided with social stimulation, meals, and activities. Day care contributed to the maintenance of a rhythm and structure in everyday life. Furthermore, the staff contributed to making the day care a safe place to be and enhanced a sense of belonging. CONCLUSION: This study reveals the positive impact of day care on the daily lives of people with dementia because this service contributes to the enhancement of activities and social support, prevents isolation, and enhances practical and cognitive functioning as experienced by the users. The staff has a major impact on the experience of the participants in the day care.

The association between attending specialized day care centers and the quality of life of people with dementia.

BACKGROUND: Day care that is designed for people with dementia aims to increase the users' quality of life (QoL). The objective of the study was to compare the QoL of people with dementia attending day care with those not attending day care. METHODS: The study is based on baseline data from a project using a quasi-experimental design, including a group of day care users (n = 183) and a comparison group not receiving day care (n = 78). Quality of Life-Alzheimer's Disease (QoL-AD) was used as the primary outcome, to collect both self-reported and proxy-based information from family carers on the users' QoL. A linear mixed model was used to examine the differences between groups. RESULTS: Attending day care was significantly associated with higher mean scores of self-reported QoL. There was no difference between the groups in proxy-reported QoL. Analyses of the interaction between group belonging and awareness of memory loss revealed that the participants with shallow or no awareness who attended day care had significant higher mean scores of QoL-AD compared to those not attending day care. CONCLUSIONS: Higher self-reported QoL was found among people attending day care designed for people with dementia compared to the comparison group. The difference in QoL ratings was found in the group of day care users with shallow or no awareness of their memory loss. Hence, day care designed for people with dementia might have the potential to increase QoL as it is experienced by the users.

The influence of day care centres designed for people with dementia on family caregivers - a qualitative study.

BACKGROUND: Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. METHODS: This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. RESULTS: Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia's needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. CONCLUSIONS: DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver's motivation and ability to care and postponing the need for nursing home placement.