Working mechanisms of dyadic, psychosocial, activating interventions for people with dementia and informal caregivers: a qualitative study

ObjectiveTo explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.DesignA qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.SettingCommunity settings and nursing homes in the Netherlands.Participants19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).ResultsThe participants’ responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.ConclusionShared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

Download Full-text

Bibliotherapy for Improving Caregiving Appraisal Among Informal Caregivers of People With Dementia

Case Medical Research ◽

10.31525/ct1-nct03852121 ◽

2019 ◽

Author(s):

Keyword(s):

Informal Caregivers ◽

People With Dementia

Download Full-text

Involving people with dementia and their informal caregivers in the development process of assistive technology: Description and evaluation of a user-centered design (Preprint)

10.2196/preprints.18319 ◽

2020 ◽

Author(s):

Iris A.G.M. Geerts ◽

Liselore J.A.E Snaphaan ◽

Inge M.B. Bongers

Keyword(s):

Focus Groups ◽

Assistive Technology ◽

Field Study ◽

Development Process ◽

Technology Development ◽

Informal Caregivers ◽

Assistive Technologies ◽

User Centered Design ◽

People With Dementia ◽

User Centered

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.

Download Full-text

Bibliotherapy for improving caregiving appraisal of informal caregivers of people with dementia: A pilot randomized controlled trial

Research in Nursing & Health ◽

10.1002/nur.22143 ◽

2021 ◽

Author(s):

Shanshan Wang ◽

Daphne Sze Ki Cheung ◽

Angela Yee Man Leung ◽

Patricia M. Davidson

Keyword(s):

Randomized Controlled Trial ◽

Controlled Trial ◽

Informal Caregivers ◽

Randomized Controlled ◽

People With Dementia ◽

Pilot Randomized Controlled Trial

Download Full-text

Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

Gerontology and Geriatric Medicine ◽

10.1177/23337214211020164 ◽

2021 ◽

Vol 7 ◽

pp. 233372142110201

Author(s):

M. Courtney Hughes ◽

Yujun Liu ◽

Abby Baumbach

Keyword(s):

Negative Impact ◽

Living Arrangement ◽

Informal Caregivers ◽

Well Being ◽

Rapid Review ◽

People With Dementia ◽

Psychosocial Resilience ◽

Quantitative Descriptive ◽

The Impact ◽

Health And Well Being

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.

Download Full-text

The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Dementia ◽

10.1177/14713012211012606 ◽

2021 ◽

pp. 147130122110126

Author(s):

Alexandra E Harper ◽

Lauren Terhorst ◽

Marybeth Moscirella ◽

Rose L Turner ◽

Catherine V Piersol ◽

...

Keyword(s):

Nursing Home ◽

Nursing Homes ◽

Home Care ◽

Scoping Review ◽

Informal Caregivers ◽

Nursing Home Care ◽

Person Centered Care ◽

People With Dementia ◽

Centered Care

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.

Download Full-text