Carolien Smits

A Longitudinal Study of the Impact of Physical and Cognitive Decline on the Personal Network in Old Age

The effects of cognitive and physical decline on changes in the size and composition of four types of personal networks over a period of six years were investigated in a Dutch sample of 1552 older adults, aged 55–85 years. The effects of age and a decline in cognitive and physical functioning on the probability of changes in all possible network types were investigated. Transitions related to age and to cognitive and physical decline were observed for about one-third of the study sample. Greater age was associated with an increase in the number of family members in the network. Physical decline was associated with a replacement of friends and neighbors by family members only if the network was large. In small networks, no such association occurred. Cognitive decline was associated with a loss of relationships, most likely friends and neighbors, who were not found to be replaced by family members. Physical decline appears to be associated with an increase in the potential number of supporters in the network, whereas cognitive decline is associated with a decrease in the number of potential supporters.

Involving people with dementia in the development of supportive IT applications: A systematic review

BACKGROUND Involving people with dementia in research is not self-evident. Inclusion of people with dementia in the development process of user-friendly, supportive IT applications may be especially useful to improve the quality of these applications and may be beneficial to the person with dementia. The aim of this study was to gain insight into the involvement of people with dementia in developing supportive IT applications. The focus of involvement was on phase, methods, role and impact on the quality of the IT application and on the person with dementia. METHOD A systematic search was undertaken using Cochrane Library, PubMED, PsycInfo, EMBASE, and CINAHL. Publications were selected using the following inclusion criteria: publications had to address a development process of an IT application involving people with dementia. The BMJ checklist was used to assess the quality of the included publications. RESULTS Twenty-six publications relating to 15 IT programs met the inclusion criteria. People with dementia were mainly involved in the exploratory and technical development phases. The methods most frequently used to involve the participants were interviews, observations and usability try-outs. In most studies, participants were objects of study and informants. People with dementia provided useful feedback and gave valuable recommendations for researchers and designers regarding the development of user-friendly, supportive, IT applications. Involvement in all phases may have empowering effects on people with dementia. CONCLUSION To develop valuable, user-friendly, supportive IT applications that increase the quality of life of people with dementia involvement in all phases of the development process is of great importance.

Cognitive and Emotional Predictors of Disablement in Older Adults

This study focused on the association between aspects of emotional and cognitive functioning and two stages of the disablement process model, functional limitations, and instrumental activities of daily living (IADL) disability. The age- and sex-stratfied sample aged 55 to 89 years consisted of 100 inhabitants of a small Dutch town who scored 24 or higher on the Mini Mental State Examination (MMSE). Controlling for background factors (health problems, age, education, and gender), depressive symptoms and fluid intelligence were independently associated with functional limitations. Of the cognitive functions, only everyday memory was independently associated with IADL disability. Emotional functioning was not independently associated with IADL disability. These findings expand on the disablement process model and demonstrate the importance of emotional functioning, fluid intelligence, and everyday memory for the disablement process.

Exploring Requirements and Alternative Pet Robots for Robot Assisted Therapy with Older Adults with Dementia

Robot assisted therapy has been applied in care for older adults who suffer from dementia for over ten years. Strong effects like improved interaction and signs of a higher sense of wellbeing have been reported. Still it is unclear which features are needed and which robotic pets would are suitable for this therapy. In this explorative research we interviewed 36 professional caregivers, both experienced and inexperienced in relationship to RAT and compiled a list of requirements. Next, we used this list to compare commercially available robotic pets. We found that many pet robots are usable, although seal robot Paro meets the requirements best, being superior on sustainability, realistic movements and interactivity. Finally, a test with alternative pets showed that different subjects were attracted to different pets and a subsequential questionnaire revealed that some caregivers were not only willing to try alternatives for Paro, but also suggesting that alternative pets could in some cases be more suitable.

Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events

This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged—managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study

Background An interactive web tool has been developed for facilitating shared decision-making in dementia-care networks. The DecideGuide provides a chat function for easier communication between network members, a deciding together function for step-by-step decision-making, and an individual opinion function for eight dementia-related life domains. The aim of this study was to gain insight in the user friendliness of the DecideGuide, user acceptance and satisfaction, and participants’ opinion of the DecideGuide for making decisions. Materials and methods A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the DecideGuide. Structured interviews took place at the start, middle, and end of the field study with people with dementia, informal caregivers, and case managers. Four observations of case managers’ home visits focused on members’ responses and use of the tool. Results (1) The user friendliness of the chat and individual opinion functions was adequate for case managers and most informal caregivers. Older participants, with or without dementia, had some difficulties using a tablet and the DecideGuide. The deciding together function does not yet provide adequate instructions for all. The user interface needs simplification. (2) User acceptance and satisfaction: everybody liked the chat’s easy communication, handling difficult issues for discussion, and the option of individual opinions. (3) The DecideGuide helped participants structure their thoughts. They felt more involved and shared more information about daily issues than they had done previously. Conclusion Participants found the DecideGuide valuable in decision-making. The chat function seems powerful in helping members engage with one another constructively. Such engagement is a prerequisite for making shared decisions. Regardless of participants’ use of the tool, they saw the DecideGuide’s added value.

Does patient coaching make a difference in patient-physician communication during specialist consultations? A systematic review

OBJECTIVE To systematically review the literature on the effectiveness of a patient coach intervention on patient - physician communication in specialists consultations. METHODS PubMed, Cochrane, PsycInfo, Cinahl and Embase were searched until November 2015. Included were papers describing interventions directed at adult outpatients in secondary care with a variety of somatic diseases. Outcomes had to be measured in communication effectivity from a patients perspective. RESULTS Seventeen publications met the inclusion criteria (involving 3787 patients), describing 13 unique interventions. Most interventions were single one-on-one sessions taking between 20 and 40min before consultation. Research quality in ten studies was high. These studies showed significant improvement on immediate, intermediate and long term patient - physician communication. CONCLUSION We found limited evidence suggesting an improvement of patient - physician communication by having multiple patient coaching encounters during which questions are prepared and rehearsed and consultations are evaluated and reflected upon, sometimes supported by audio recording the consultation. PRACTICE IMPLICATIONS The results of this review contribute to the (re-)design of an effective model for patient coaching, a profile and training approach of patient coaches. Future research should aim at determining which patients will benefit most from coaching interventions.

Optimizing Tailored Health Promotion for Older Adults: Understanding Their Perspectives on Healthy Living

Objective: This study explores older adults’ perspectives on healthy living, and their interactions with professionals regarding healthy living. This perspective is necessary for health professionals when they engage in tailored health promotion in their daily work routines. Method: In a qualitative study, 18 semi-structured interviews were carried out with older adults (aged 55-98) living in the Netherlands. The framework analysis method was used to analyze the transcripts. Results: Three themes emerged from the data—(a) healthy living: daily routines and staying active, (b) enacting healthy living: accepting and adapting, (c) interaction with health professionals with regard to healthy living: autonomy and reciprocity. Discussion: Older adults experience healthy living in a holistic way in which they prefer to live active and independent lives. Health professionals should focus on building an equal relationship of trust and focus on positive health outcomes, such as autonomy and self-sufficiency when communicating about healthy living.

Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach

Abstract Purpose: The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks. Method: An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data. Results: Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment. Conclusions: People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools. Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.

Recognizing decision needs: first step for collaborative deliberation in dementia care networks

OBJECTIVE This study describes the process elements of decision-making for dementia, in order to enrich a model to facilitate shared decision-making for professionals working with people with dementia and their informal caregivers. METHODS We performed a qualitative study based on secondary analysis of 117 interviews from 23 care networks consisting of people with dementia, their informal caregivers and professionals. Findings were compared to an existing model of collaborative deliberation. RESULTS We made an enhancement to the existing collaborative deliberation model, to include: (1) constructive network engagement, (2) recognizing the need for a decision, (3) defining what to decide on, (4) developing alternatives, (5) constructing preferences through deliberation and trying out alternatives, (6) multiple preference integration, and (7) evaluating decision-making. CONCLUSION In describing the process elements of decision-making in dementia, this empirical study proposes a modification of the model of collaborative deliberation for the context of dementia care. The adaptation highlights the special attention needed to recognize and define what to decide on, try out alternatives, and handle conflicting interests and preferences. PRACTICE IMPLICATIONS Professionals should be attentive to mark the start of the decision-making process and work with participants towards a shared view on the pressing matters at hand.