A universal dilemma faced by family and friends (care network) of a person with dementia (PWD) is how to effectively communicate, interact, and psycho-socially connect with the PWD as the dementia progresses and their abilities decline. Communication difficulties, agitation, strain between family members and the PWD, and activity challenges often continue throughout the disease process. Although resources are available to caregivers, they have limitations: Training programs often require repeated sessions and target the primary caregiver rather than members of the care network. Written materials may offer tips but do not include the tools that caregivers can actually use.
AIM : This project will develop and test the feasibility of the Families Interacting Together Kits (FIT kits), which are de- signed to provide the care network with tools to promote positive interactions and constructive engagement for a PWD. INNOVATION: The kits contain hands-on activity and engagement materials, an instruction guide and video to demonstrate techniques and benefits, and a link to a web site that provides product support and addresses frequently asked questions. This holistic approach is what makes the FIT kits innovative. The kit simultaneously promotes functional abilities and aims to reduce problematic behavior through non-pharmacological methods that match activities to a PWD's cognitive and physical abilities. METHODS: This Phase I project consists of two steps: Step 1 involves 4 focus groups (n=16-24) consisting of care network members, and Step 2 involves a small pilot trial of 12 dyad participants. The goal of Step 1 is to understand the respondents'perceptions, experiences, and preferences with dementia-focused tools and resources available in the community and reaction to the FIT prototypes. Results will lead to refinement of the prototypes. The goal of Step 2 is to conduct a pilot trial using a sample of 12 participants and their PWD. A baseline in-person interview will be conducted followed by 4 to 8 daily observations over a 30-day period that tracks usage and reaction to the kits. Participants and their PWDs will then participate in either a follow-up focus group or interview that assesses their qualitative experience with the kits. Outcomes of this Phase I project include: 1) Pre- and post-intervention data on the PWD's behavior;2) Up to 8 time-series data points that assess the within-person variability of activities, interactions, and behavior related to the use of the kit and/or its non-use;3) Qualitative data on the benefits and challenges on using the kit;4) Further refinement of FIT Kit prototypes;5) Pilot evidence of the kits'effectiveness that will inform the power analyses required for a full-scale Phase II trial;and 6) Focus group and pilot evidence that will inform the project's commercialization potential.
A universal challenge faced by family and friends of a person with dementia (PWD) is how to effectively communicate, interact, and stay psycho-socially connected with the PWD as the dementia progresses and a PWD's abilities decline. Current resources are either targeted only to the primary caregiver or involve written tips rather than hands-on therapeutic materials and de- vices that the care network can put to use immediately. The goal of this project is to develop and test the feasibility of the Family Interacting Together Kit (FIT Kits), which are interactive, ready-to-use kits designed to provide all members of the care network and PWD with strategic tools and materials to promote positive interactions and constructive engagement for a PWD.
| Love, Karen; Femia, Elia (2015) Helping Individuals With Dementia Live More Fully Through Person-Centered Practices. J Gerontol Nurs 41:9-14 |
