The number of patients treated with prolonged mechanical ventilation (PMV) is steadily rising. Traditionally treated within specialized long-term care facilities (LTCFs), healthcare providers are increasingly promoting homecare as a technologically safe, humane, and cheaper alternative. Little is known concerning their informal caregivers (ICGs), despite their crucial role in facilitating care. This study examines caregiver strain among the primary ICG of PMV patients treated at home vs. LTCF.

This study was an observational cross-sectional study. The study enrolled 120/123 PMV patients ≥18 years within the study region (46 treated with homecare/74 treated at the LTCF) and 106 ICGs (34 ICGs/46 homecare patients and 72 ICGs/74 LTCF patients). Caregiver assessment included the 13-item Modified Caregiver Strain Index (Mod CSI) (0–26 maximum); patient assessment included symptom burden (the revised Edmonton Symptom Assessment System).

The mean age of ICGs was 58.9 years old; 60.4% were females; 82.1% were married; 29.2% were patient's spouses; and 40.6% were patient's children. The total Mod CSI was 13.58 (SD 6.52) and similar between home vs. LTCF (14.30 SD 7.50 vs. 13.26 SD 6.03, p = 0.50), or communicative vs. non-communicative patients (13.50 SD 7.12 vs. 13.64 SD 6.04, p = 0.93). Hierarchical analysis identified three clusters of caregiver strain, with ICGs at home vs. LTCF reporting significantly lower mood strain, higher burden, and similar levels of lifestyle disturbance. In adjusted models, homecare was significantly associated with reduced mood strain and increased burden, while increased patient symptomatology was significantly associated with total strain, mood, and burden strain clusters.

Recognizing the different patterns of caregiver strain at home or LTCF is a prerequisite for addressing their palliative care needs and improving the wellbeing and resilience of informal caregivers, who often play a critical role in deciding whether to treat the PMV patient at home or LTCF.

To explore differences in prevalence and disturbance of behavioral and psychological symptoms of dementia (BPSD) between institution-dwelling and community-dwelling patients with dementia.

A cross-sectional survey was conducted. Institution-dwelling (n=112) and community-dwelling patients with dementia (n=157) were enrolled from a nursing home and a tertiary psychiatric hospital located in Guangzhou, China, from March 2019 to September 2019. Neuropsychiatric Inventory (NPI) was used to assess the prevalence and disturbance of BPSDs.

The community-dwelling patients were older, and having more antianxiety, anticonvulsant, anti- depression, anti-dementia medication use than institution-dwelling patients, while institution-dwelling patients used more antipsychotics than community-dwelling patients. The prevalence of hallucinations (χ2 = 8.55, P = 0.004), agitation (χ2 = 5.38, P = 0.026), depression (χ2 = 22.78, P < 0.001), anxiety (χ2 = 47.17, P < 0.001), aberrant motor behavior (χ2 = 4.72, P = 0.034), and sleep (χ2 = 4.16, P = 0.047) was higher in community-dwelling patients than that in institution-dwelling patients. Moreover, the frequency, severity, and disturbance of almost all of the BPSDs were higher in community-dwelling patients than those in institution-dwelling patients, except for euphoria. High Odds of having hallucination (OR 2.48, 95% CI 1.37-4.49), anxiety (OR 7.36, 95% CI 3.82-14.17), sleep disorder (OR 1.77, 95% CI 1.02-3.10) was observed in community-dwelling patients. Severe dementia was another risk factor for having hallucination (OR 5.48, 95% CI 2.25-13.38), anxiety (OR 2.73, 95% CI 1.22-6.12), sleep disorder (OR 2.61, 95% CI 1.21-5.64), apathy (OR 3.03, 95% CI 1.49-6.19), and irritability (OR 2.6, 95% CI 1.24-5.51). Community-dwelling and severe dementia were two main risk factors for higher NPI scores (adjusted R2 = 0.30), and higher disturbance of anxiety (adjusted R2 = 0.21), sleep disorders (adjusted R2 = 0.15), hallucination (adjusted R2 = 0.12) and irritability (adjusted R2 = 0.11).

The prevalence and disturbance of BPSDs were higher in community-dwelling patients with dementia than institution-dwelling patients. Community-dwelling and severe dementia were two main risk factors for higher prevalence and disturbance of BPSDs, especially for anxiety, sleep disorders, and hallucination. Providing community-based BPSDs coping skill training and support for informal caregivers are needed.

In the literature, service users and informal caregivers have been critical towards psychiatric inpatient care. However, little is known about their fears related to hospital care.

We describe service users’ and informal caregivers’ experiences of fear in psychiatric hospital settings.

The data were collected from seven mental health associations located in six Finnish cities. Focus group interviews (f=8) were conducted (2015–2016) with service users (n=20) and informal caregivers (n=15), and were guided to focus on violence and challenging situations in psychiatric care. In a secondary analysis, experiences of fear were extracted from the transcriptions and analyzed using inductive content analysis.

Both groups’ experiences of fear focused on themes related to staff, treatment and fellow patients. Additionally, service users had experiences of fear related to the hospital environment. Fears related to staff involved intimidating personnel using force or acting in threatening ways. Participants also described staff seemingly being afraid of patients and care givers. Three types of fears related to treatment were described: fear of not being admitted to hospital even if needed, fear of being admitted to hospital, and fear of coercive methods used in care. Fear of fellow patients involved being afraid of aggressive, unpredictable behaviors, which could cause, e.g., a lack of sleep at night for service users. Fears related to the environment itself were also discussed.

Being hospitalized can be a difficult experience for service users and informal caregivers. These results can help psychiatric healthcare staff acknowledge areas in care that may potentially cause feelings of fear.

No significant relationships.

Caring for a person with dementia is associated with poor mental, physical, and social health, which makes it important to consider how carers are best supported in their caring role to preserve both their and the person with dementia’s well-being. At present, a robust instrument to assess carers’ support needs does not exist. This study aimed to develop a self-reported questionnaire to assess the support needs of carers of people with dementia. The objectives were to: (1) generate items, (2) pilot test, and (3) field-test the questionnaire.

Development and field-testing of a new questionnaire.

Primary and secondary health and social care of informal carers and people with dementia in nine municipalities and one dementia clinic in a hospital in Denmark.

Eight experts, 12 carers, and 7 digital users participated in pilot testing. 301 carers participated in field-testing.

Items for inclusion were generated based on interviews and literature review. An iterative process of data collection was applied to establish face and content validity of the Dementia Carer Assessment of Support Needs Tool (DeCANT) using Content Validity Index among experts and cognitive interviews with carers. Field-testing of DeCANT among carers included using the 12-item Short Form Health Survey, the Barthel-20 Index, and the Neuropsychiatric Inventory.

Initially, an item pool of 63 items was generated, and pilot testing reduced this to 42 items. Subsequent field-testing resulted in a 25-item version of DeCANT, and confirmatory factor analysis of three hypothesized models demonstrated a marginally better fit to a four-factor model with fit indices of: χ2 = 775.170 (p < 0.001), root mean square error of approximation = 0.073, Comparative Fit Index = 0.946, the Tucker-Lewis Index = 0.938, and weighted root mean residual (WRMR) = 1.265.

DeCANT is a 25-item carer-reported questionnaire that can be used to help identify their support needs when caring for a person with dementia to enable supportive interventions and improve carers’ health and well-being.

The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).

Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically.

A total of four global support needs emerged: “more personal time”, “assistance in applying for resources”, “counseling”, and “peer contact”. Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients.

ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers’ support needs.

Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks.

Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes.

Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance.

Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions.

PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors.

A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given.

Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes.

Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.

Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.

Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.

Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.