A Method for Eliciting the Support Needs from People with Early-Stage Dementia for Maintaining Social Living

Author(s):  
Hirotoshi Yamamoto ◽  
Yasuyoshi Yokokohji ◽  
Hajime Takechi

In the area of welfare engineering, various technological research and developmental efforts have been made to support people with dementia. However, it is not clear if these efforts are based on the real needs of these people. When providing support to people with dementia, it is essential to know exactly what their needs are. Nevertheless, it is not easy to obtain appropriate answers from these people by simply asking “How can we help you?” In addition, it is unlikely that answers from those people will cover all of their support needs. In this chapter, a new method based on the “Person-Centered Care” concept is proposed for eliciting the support needs from, and determining their priorities for people with early-stage dementia who are eager to maintain their social living despite coping with various difficulties. First, all of the actual and potential tasks of social living in their daily life are determined. Support needs are then extracted systematically from those tasks by paying attention to what factors are bothering these people or are confusing to them rather than directly asking the individuals what type of support they want or need. Finally, the support needs are prioritized by taking the degree of the individuals’ confusion and task frequency into consideration. When interviewing people with dementia, special care must be taken to ensure that the individuals who have memory impairment are not overburdened . In the proposed method, visual materials such as cards and boards with illustrations are utilized so that people with dementia can answer questions more easily. Some interviews were conducted based on the proposed method to confirm that support needs can be determined systematically from people with early-stage dementia.

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  

Abstract 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.


2020 ◽  
Vol 32 (S1) ◽  
pp. 125-125
Author(s):  
Marleen Prins ◽  
Bernadette Willemse ◽  
Marlous Tuithof ◽  
Henriëtte van der Roest ◽  
Anne Margriet Pot

IntroductionThe quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.MethodsData from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.ResultsThe number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.ConclusionsDuring the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.


Dementia ◽  
2021 ◽  
pp. 147130122110126
Author(s):  
Alexandra E Harper ◽  
Lauren Terhorst ◽  
Marybeth Moscirella ◽  
Rose L Turner ◽  
Catherine V Piersol ◽  
...  

Background Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia. Methods In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com , CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes. Results We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances. Conclusion Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.


2017 ◽  
Vol 29 (12) ◽  
pp. 2099-2103 ◽  
Author(s):  
Anita M. Y. Goh ◽  
Samantha M. Loi ◽  
Alissa Westphal ◽  
Nicola T. Lautenschlager

ABSTRACTTouchscreen technology (TT) is a resource that can improve the quality of life of residents with dementia, and care staff, in residential aged care facilities (RACF) through a person-centered care approach. To enable the use of TTs to engage and benefit people with dementia in RACFs, education is needed to explore how these devices may be used, what facilitates use, and how to address barriers. We sought to provide education and explore RACF staff views and barriers on using TT to engage their residents with dementia. An educational session on using TT with residents with dementia was given to staff from three long-term RACFs in Melbourne, Australia. A cross-sectional convenience sample of 17 staff members (personal care attendants, registered nurses, enrolled nurses, allied health clinicians, and domestic staff) who attended were administered questionnaires pre- and post-sessions. As a result of the education seminar, they were significantly more confident in their ability to use TT devices with residents. TT, and education to staff about its use with residents with dementia, is a useful strategy to enhance RACF staff knowledge and confidence, thereby enhancing the use of technology in RACFs in order to improve care standards in people with dementia.


2021 ◽  
Vol 7 ◽  
pp. 233372142110418
Author(s):  
Pamela A. Saunders ◽  
Tara McMullen ◽  
Sonya Barsness ◽  
Andrew Carle ◽  
Gay Powell Hanna

The national response to the COVID-19 pandemic pressed gerontologists to reflect, redesign, and reform services supporting older adults. Efforts to isolate a peer cohort to stabilize and maintain a standard of health had adverse outcomes and added pressure conflicting with autonomy and individual desires. In this, person-centered care emerges as a meaningful archetype to address dignity and independence. This article presents views from academics and practitioners across an interdisciplinary spectrum, arising from a webinar hosted by Georgetown University Program in Aging & Health. A description of personhood as an extension of the humanities is followed by a robust discussion of safety and autonomy for older adults during the COVID-19 pandemic. We examine the necessary commute between critical gerontological theory and the practice of humanistic gerontology. Further, this article disentangles humanism and person-centered care to balance autonomy and safety for older adults in congregate living situations and focuses on specific populations: people with dementia and their care partners. Discussion on the importance of person-centered policy development in a public health pandemic is also explored. The article concludes with a call to action for the adoption of a comprehensive person-centered care model across the fields of gerontology and geriatric medicine.


2017 ◽  
Vol 29 (11) ◽  
pp. 1785-1800 ◽  
Author(s):  
Sarah Alsawy ◽  
Warren Mansell ◽  
Phil McEvoy ◽  
Sara Tai

ABSTRACTBackground:Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included.Methods:A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases.Results:After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, “open exploration,” or through examining experiences of strategies, “exploration of strategies.” A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication.Conclusions:The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.


2021 ◽  
Vol 33 (S1) ◽  
pp. 37-38
Author(s):  
Henriëtte van der Roest ◽  
Milan van der Kuil ◽  
Anouk Overbeek ◽  
Egbert Hartstra

BackgroundPositive evidence has been found for person-centered care provisioning (PCC), the level of person- centeredness of care is positively associated with residents’ quality of life, quality of care an wellbeing.When providing PCC, care and support are provided in line with the needs, preferences and capacities of people with dementia. PCC is seen as the golden standard for dementia care. However, in nursing homes, needs and preferences of people with dementia are not always obvious, due to the relatively high levels of cognitive impairment. This, and amongst others time constraints might hinder high PCC by care professionals. Limited evidence show that certain organizational and environmental conditions, such as satisfactory leadership, interdisciplinary collaboration, and continuing education, lead to higher PCC. In order to facilitate care professionals as much as possible in providing PCC, more insight is desirable.ObjectiveThis study aims to provide more insight into the modifiable factors that contribute to PCC for people with dementia in Dutch nursing homes.MethodsA cross-sectional design was applied. Data were collected during the fifth assessment of the Living Arrangements for people with Dementia (LAD)-study from April 2019 until February 2020. Care professionals working in psychogeriatric units in nursing homes filled in an online survey. Organizational characteristics of participating nursing homes were inventoried.The level of PCC was assessed with the Dutch version of the ‘Person-centred care questionnaire’ (PCCq). Modifiable factors potentially impacting the level of provided PCC with regard to staff characteristics (e.g. autonomy, education), organizational features (e.g. size, involvement of family in care), and culture (e.g. learning climate) were included in multiple linear modelling.Preliminary resultsIn total 58 nursing home facilities were included in the study, and 814 care professionals completed the survey. Average PCCq score was 3.2 (SD = 0.4; range 0 to 4, higher scores indicating higher PCC).ConclusionFactors related to staff, and organizational features and culture, that contribute to PPC will be presented. The outcomes of the study will provide input for the optimal organization of dementia care, in order to support care professionals working in nursing homes to provide PCC.


2020 ◽  
Author(s):  
GUBING WANG ◽  
Armagan Albayrak ◽  
Gerd Kortuem ◽  
Tischa J. M. van der Cammen

BACKGROUND Person-centered care is key to the wellbeing of people with dementia. A large quantity of personal data can be collected with the development of the Internet of Things, which has the potential to facilitate person-centered care for people with dementia. Yet, there are limited assistive technologies developed for this purpose, and the user acceptance for assistive technologies is low in nursing homes. Through a data-enabled design approach, a digital platform was developed for helping the care team to personalize the management of behavioral and psychological symptoms for people with dementia in nursing homes. OBJECTIVE This study aims to evaluate the digital platform from three aspects, in a real-life context with potential users. First, its technical feasibility in collecting sufficient data for pattern analysis; second, the types of insights and actions generated from the potential users by using it, if any; third, its perceived usefulness and its future improvements that potential users would like to see. METHODS The digital platform was deployed in a nursing home for seven weeks, and the data collected were first analyzed by the researchers for a technical feasibility check. The data were then visualized and presented to the potential users via the digital platform. The potential users were asked to analyze the visualizations and were interviewed on 1) the insights and actions generated, if any; 2) the usefulness of the digital platform and 3) what could be improved. RESULTS The data collected in the digital platform demonstrate its technical potential to reveal behavior patterns for PwD. The insights generated by the potential users were categorized into “client level”, “ward level” and “team level”. The actions taken by the potential users were classified into “investigation” and “implementation”. The user acceptance varied across potential users, and three aspects of improvements for the digital platform were identified. CONCLUSIONS This study provides the first evidence for the technical feasibility of the digital platform; besides, it offers future researchers some recommendations on how to integrate assistive technologies in the nursing home context from exploring the types of insights and actions identified, the varied perceived usefulness, and the areas of improvement for the digital platform.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S891-S891
Author(s):  
Claudia van der Velden ◽  
Iris van Asch ◽  
Elsemieke van belzen

Abstract Most often the diagnosis dementia gives people clarification, but at the same time it raises questions and causes a range of emotions. According to professionals, support for people with dementia and family carers (dyads) nowadays is mainly focused on later-stage-dementia instead on early-stage. Besides, this support is mostly about practical/medical topics and less about emotional/psychological or social topics. Studies show that it is a complex process dyads to cope with the diagnosis in their daily life directly after diagnosis. The aim of the present study was to examine the specific needs of dyads in order to support them in the early-stages after diagnosis. Focus groups, interviews and a literature-review were performed to determine these needs. Together with professionals, the findings were translated into a conversation guide, which helps professionals to have a structured dialogue on practical/medical, emotional/psychological and social topics to support dyads in an early-stage after diagnosis. An evaluation is conducted by observations and interviews with dyads and a work-session with professionals. People with dementia, their caregiver(s) and professionals experienced these conversations as very positive. Dyads indicated the type of counsellor (accessible, warm and open), timing of the conversation and topics about ‘not making the diagnosis too heavy’ and ‘sharing the diagnosis with others’ as important. The professionals were also very positive about the conversations. Important themes for them were focusing on the more personal, holistic and preventive approach in the conversations.


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