The perseverance time of informal carers for people with dementia: Results of a two-year longitudinal follow-up study

Background: Given the projected increase of people with dementia over the next few decades and the related demand for informal care, an important question for health policy makers is to what extent and for how long informal carers can be expected to provide care in a sustainable way. This study aimed to investigate the perseverance time of informal carers for people with dementia. Methods: A 2-year longitudinal cohort study was conducted. Questionnaires were used to collect data about the care situation, the impact of caregiving on carers and their need for support, and the anticipated and realized perseverance time of informal carers for people with dementia living at home. The data were analysed using bivariate and multivariate analyses. Results: Two hundred twenty-three carers for people with dementia were included in the study and 25 (11.2 %) dropped out during the follow-up. The results show that after 1 year, 74 (37.4 %) of 198 patients were still living at home, and after 2 years, 44 (22.2 %) patients were still living at home. The variables that were associated with this outcome were identified. When informal carers anticipated that their perseverance time would be less than 1 year, this was indicative of their actual perseverance time. Conclusions: Anticipated perseverance time provides a fair indication of the actual duration of informal care. It is most accurate when carers anticipate a limited rather than an unlimited perseverance time. Although further research is required to support these findings, the concept of perseverance time may be considered a useful additional instrument in health policy and clinical practice for monitoring carers' need for support and for planning the transition of care from home to a nursing home

Communicating with people living with dementia who are nonverbal: the creation of Adaptive Interaction

Loss of verbal language production makes people with dementia appear unreachable. We previously presented a case study applying nonverbal communication techniques with a lady with dementia who could no longer speak, which we termed Adaptive Interaction. The current small-n study examines the applicability of Adaptive Interaction as a general tool for uncovering the communication repertoires of non-verbal individuals living with dementia. Communicative responses of 30 interaction sessions were coded and analysed in two conditions: Standard (Baseline) and Adaptive Interaction (Intervention). All participants retained the ability to interact plus a unique communication repertoire comprising a variety of nonverbal components, spanning eye gaze, emotion expression, and movement. In comparison to Baseline sessions, Intervention sessions were characterised by more smiling, looking at ME and imitation behaviour from the people with dementia. These findings allude to the potential of Adaptive Interaction as the basis for interacting with people living with dementia who can no longer speak

Perseverance time of informal carers. A new concept in dementia care. Validation and exploration

Introduction and aim Because of the expected increase of dementia patients in the next decades and the growing demand for formal care, an important question appears: how to predict and influence the caring possibilities of informal carers. We introduce the concept perseverance time, describedas the period of time that informal carers expect to be able to continue performing their care tasks for their relative with dementia; the length of that period of time is influenced by a combination of factors. The overall aim of our studies was to explore the feasibility, validity, and added value of perseverance time within the context of decision making in dementia care. Methods Data were collected from 223 informal carers of dementia patients. Perseverance time was measured by asking informal carers: ‘If the informal care situation stays as it is now, how long will you be able to cope with the care?’Convergent validity was assessed by looking at associations of perseverance time with validated instruments for measuring subjective burden (CSI, CarerQol-7D and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between perseverance time and characteristics of dementia patients, informal carers and the care situation. To trace profiles of informal carers related to perseverance time we used the Q-methodology. Grounded theory was used to evaluate the nursing home placement by informal carers. Finally we investigated how the timing of admission to a nursing home was related to perseverance time of the informal carer. Results The convergent validity of perseverance time based on its associations with subjective burden appeared to be good. The association with happiness was also significant. The content validity appeared fair to good for perseverance time of more than half a year and more than one year and declined for a perseverance time of more than two years. Informal carers with a limited perseverance time made a reliable prediction of the end of their perseverance time. The predictive value of informal carers who indicated an unlimited perseverance time varied. Five distinct profiles of caregiving were identified that differed significantly from each other, and were associated with perseverance time. The decision by informal carers to the admission of their relative with dementia often had to be taken under time pressure in order to avoid a place in the nursing home being left empty. However, after the admission informal carers reported that they could have continue their care task for another six months on average if the admission had not taken place. Conclusion Results of our study suggest that both feasibility and validity of perseverance time is favourable within the context of informal care for persons with dementia. To ask for perseverance time is a direct way to investigate how long informal carers can continue their current informal care tasks. In addition to its relevance for research in the field of informal care, the information about perseverance time may also prove useful in practice in providing timely support to informal carers to prevent overburdening and crisis admissions

The perseverance time of informal carers of dementia patients: validation of a new measure to initiate transition of care at home to nursing home care

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)—the period that the informal carer indicates to be able to maintain current care if the situation remains stable—is an important concept. Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home. Methods: Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol. Results: Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were ?0.46, ?0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated. Conclusions: Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary

The Perseverance Time of Informal Carers of Dementia Patients: Validation of a New Measure to Initiate Transition of Care at Home to Nursing Home Care

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)—the period that the informal carer indicates to be able to maintain current care if the situation remains stable—is an important concept. Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home. Methods: Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol. Results: Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were ?0.46, ?0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated. Conclusions: Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary