Managing differences: care of the person with frontotemporal degeneration.

Caring for people with non-Alzheimer's dementias is particularly challenging for families and care providers. This is especially true for those with frontotemporal degeneration (FTD) who exhibit profound changes in personality, behavior, language, and movement. Initial symptoms are often misdiagnosed as psychiatric disorders or early-onset Alzheimer's disease, and typically do not respond to pharmacological and nonpharmacological interventions designed for people with other dementias. Using individual examples, this article illustrates common features of two subtypes of FTD: behavioral variant FTD and non-fluent primary progressive aphasia.

Supportive Care for Dementia: A Replicable Model to Reduce Neurobehavioral Symptoms, Caregiver Stress, and Hospitalizations, and Increase Hospice Referrals.

Objective: This report describes a hospice-supported no-fee program to support patients living with all levels of dementia and their caregivers. Background: Our medical system struggles to serve the rapidly increasing numbers of patients with dementia. Hospice of the Valley developed a low-cost six-month program to reduce caregiver stress and reduce neurobehavioral disturbances of patients living with dementia, reduce costs for insurers, and increase hospice referrals. Methods: Data were analyzed from 532 patients living with caregivers admitted over 22 months. Caregiver burden, behaviors, hospitalization, and hospice admissions were tracked. Results: Severity of neurobehavioral disturbances and burden to caregivers decreased significantly. Hospitalizations decreased during and after the program, resulting in cost savings for insurance programs. Twenty-five percent of participants were admitted to hospice. Discussion: The Supportive Care for Dementia program was welcomed by community physicians, leading to improved supportive care and increased hospice referrals. The program is replicable and has been adopted by one health plan and is being evaluated by others.

Comfort First: Development and pilot testing of a web-based video training to disseminate Comfort Matters dementia care.

BACKGROUND: Alzheimer's disease-related dementias (ADRD) are a leading cause of disability and death. In late-stage ADRD most people prioritize comfort, but care to achieve comfort is rare. Comfort Matters combines palliative and geriatric care practices for nursing home dementia care, but in-person training reaches few sites. To facilitate dissemination, we developed Comfort First, a web-based training toolkit with video demonstration of Comfort Matters practices. METHODS: We developed and pilot-tested Comfort First (NIA Intervention Stage 1). Stakeholder advisors representing nursing home residents, caregiver, and clinical perspectives guided development. Professional videographers filmed Comfort Matters staff to illustrate comfort-focused dementia care skills. Video training modules, supported by an implementation manual, address Understanding the Person with Dementia, Promoting Quality of Life and Comfort, Working as a Team, Responding When People with Dementia are Distressed, Addressing Pain, and Making Comfort First a Reality. We then delivered Comfort First to 3 nursing homes. Implementation and outcome evaluation assessed the number and clinically diverse roles of trained staff and post-test knowledge. RESULTS: Nursing home staff roles (n = 146) were diverse: certified nursing assistants (40%), nurses (19%), administrators (11%), activities staff (6%), therapy staff (5%) and other roles. Individual participants' knowledge scores ranged from 50-100%; however average post-test knowledge scores were high, ranging from 90% (Addressing Pain) to 99% (Promoting Quality of Life and Comfort, Making Comfort First a Reality). CONCLUSIONS: The Comfort First web-based training toolkit combines best practices in palliative care and geriatric care for ADRD, using video demonstrations to support broader dissemination of these skills. Initial evaluation demonstrates acceptability and knowledge uptake for staff in diverse clinical roles; future research should include evaluation of practice change. Consistent with the intent of its public funding, Comfort First will be widely disseminated at a minimal cost.

Evaluating a protocol to train hospice staff in administering individualized music.

The ongoing extension of the average human lifespan in most parts of the world forecasts an unprecedented number of aging adults developing Alzheimer's disease or related dementia. Behavioural and psychological symptoms of dementia, commonly referred to as agitated behaviours, are estimated to occur in over 80% of patients and are typically treated using antipsychotic medications, posing significant morbidity and mortality risks. An evidence-based protocol known as individualized music (IM) offers a non-pharmacological intervention to reduce agitation. This project, using a one-group pre-test-post-test design, was implemented by training a self-selected sample of 24 hospice professionals to use the IM protocol with dementia patients. The effectiveness of the training on increasing the participants' knowledge of and confidence in using IM was explored. Paired t-tests were employed to analyze the data and the results of the analysis were encouraging, suggesting that it is feasible to educate multidisciplinary hospice staff in implementing the IM protocol. Thus, there is potential for using IM in the palliative treatment of persons with advanced dementia.