A comparison of caregiver burden between long-term care and developmental disability family caregivers

Background As the United States’ population ages and health concerns rise, the family caregiver occupation will continue to be an integral part of the health care system. Aims It is important to examine the burden that family caregivers experience so they can seek out additional training and services to maintain their own well-being. The researchers examined caregiver burden from a perspective of developmentally disabled and long-term care. Methods The researchers examined difference in Zarit scores, guilt, burden and personal strain for 72 caregivers of people with developmental disability (DD) or people with long-term care (LTC) needs. The researchers also examined differences in these based on whether the individual was caregiving for family or “others”. Results For DD, there were significant differences in Zarit, role strain and personal strain; caring for others has significantly lower scores on these. Role strain was significantly higher than personal strain, which was significantly higher than guilt for both LTC and DD groups. Conclusions Given these findings, it is important to support family caregivers first and foremost with role strain, especially for those caring for family members with DD. This support could be given through personal counselling, caregiver training, non-profit social service resources, and support groups for family caregivers.

A Model to Transform Communities Toward Becoming Dementia Inclusive

As the US population ages, the prevalence of people living with dementia will also increase. It is estimated that by 2050, 13.8 million American’s 65 and older will be diagnosed with dementia, and currently only 40% of those living with dementia receive an official diagnosis. 70% of people living with dementia live in the community. In order to optimize quality of life and extend each person’s ability to remain living in their homes for as long as possible, it is important for communities to educate consumers and providers alike about Alzheimer’s Disease and related dementias, focusing on behaviors and interventions. This education must cross multiple sectors to effectively increase awareness, decrease stigma, and enable participation in community living for people living with dementia and their caregivers. Dementia Friends USA offers a framework for implementation of dementia friendly inclusive community initiatives that spans professions and incorporates patient and caregiver perspectives. The four symposia will 1) lead us through the evidence that supports the Dementia Friends USA approach, 2) demonstrate how this approach can be operationalized in a truly integrated fashion at the community level using HRSA’s Geriatric Workforce Enhancement Program (GWEP), 3) provide step-by-step instructions for implementing Dementia Friends Community sessions, focusing on one sector at a time (in this case the Developmental Disability population), and 4) discuss the individual and community level outcomes of Dementia Friends implementation.

Identifying and Validating Prelinguistic Communicative Forms and Functions in Children with Developmental Disability

<p>While children with developmental disabilities often fail to develop speech, many will nonetheless engage in a range of prelinguistic behaviours. Prelinguistic behaviours include actions such as eye gaze or eye pointing, pointing with a finger, facial expressions (e.g., smile, frown), and body movements (e.g., waving an arm, leg extension). The purpose of this research project was to evaluate procedures for (a) identifying prelinguistic forms in the repertoires of children with developmental disability, and (b) validating the communicative function, if any, of these existing prelinguistic behaviours. This was achieved through a three-phase study involving a total of 10 children with developmental disabilities and their parents. For Phase 1, the author interviewed each child’s parent(s) and teacher using a structured protocol; The Inventory of Potential Communicative Acts (IPCA; Sigafoos, Woodyatt, Keen et al., 2000). The IPCA has been used in numerous previous studies to identify prelinguistic behaviours that are interpreted as forms of communication. In Phase 2, the author used informant report to identify and replicate six situations: three in which each participant was reported to communicate a specific function and three in which he/she reportedly did not communicate. The author then compared the children’s responses during the clinical trials to the behaviours he/she was reported to use for the targeted function. In Phase 3, the parent replicated the structured trials used in Phase 2 to determine whether participant performance varied relative to communicative partner. Findings from this study provide evidence to support the validity of the IPCA as an interview protocol for identifying potential communicative acts in children with developmental disability and severe communication impairment. The comparisons made between the reported communicative behaviours used for each function revealed both similarities and differences across children. The results also provide evidence that children with severe communication impairment and developmental disability are using similar behaviours to communicate specific functions across different environments and with different communicative partners.</p>

Identifying and Validating Prelinguistic Communicative Forms and Functions in Children with Developmental Disability

<p>While children with developmental disabilities often fail to develop speech, many will nonetheless engage in a range of prelinguistic behaviours. Prelinguistic behaviours include actions such as eye gaze or eye pointing, pointing with a finger, facial expressions (e.g., smile, frown), and body movements (e.g., waving an arm, leg extension). The purpose of this research project was to evaluate procedures for (a) identifying prelinguistic forms in the repertoires of children with developmental disability, and (b) validating the communicative function, if any, of these existing prelinguistic behaviours. This was achieved through a three-phase study involving a total of 10 children with developmental disabilities and their parents. For Phase 1, the author interviewed each child’s parent(s) and teacher using a structured protocol; The Inventory of Potential Communicative Acts (IPCA; Sigafoos, Woodyatt, Keen et al., 2000). The IPCA has been used in numerous previous studies to identify prelinguistic behaviours that are interpreted as forms of communication. In Phase 2, the author used informant report to identify and replicate six situations: three in which each participant was reported to communicate a specific function and three in which he/she reportedly did not communicate. The author then compared the children’s responses during the clinical trials to the behaviours he/she was reported to use for the targeted function. In Phase 3, the parent replicated the structured trials used in Phase 2 to determine whether participant performance varied relative to communicative partner. Findings from this study provide evidence to support the validity of the IPCA as an interview protocol for identifying potential communicative acts in children with developmental disability and severe communication impairment. The comparisons made between the reported communicative behaviours used for each function revealed both similarities and differences across children. The results also provide evidence that children with severe communication impairment and developmental disability are using similar behaviours to communicate specific functions across different environments and with different communicative partners.</p>