With few options for families facing dementia, Niagara Hospice expands community-based care program

As Alzheimer's disease and related dementia diagnoses continue to increase in our region, it is essential to devote additional resources toward customizing patient care and enhancing family support options. This growing population has many unique needs while living with various symptoms and challenges. Additionally, these patients' families and caregivers experience great stress and fatigue in managing their care.

Nationally, 10 percent of the population that is older than 65 years has Alzheimer's disease. According to the New York State Department of Health, there are about 400,000 residents with Alzheimer's disease across our state. Over the next six years, this figure is forecasted to grow to 460,000. Nearly 33 percent of senior citizens who die each year in New York have some form of dementia.

In Niagara County, approximately 19 percent of the population is 65 years or older. Given the population estimate of 212,000 for the county, there may be about 4,000 residents in Niagara County affected by Alzheimer's disease or other dementia conditions. During the 2017-18 fiscal year, Alzheimer's disease and related dementia diagnoses continued to increase, comprising nearly 30 percent of admissions to Niagara Hospice.

Treating dementia demands a more specialized approach as the conditions are not the same as other end-of-life care. Prescriptions are not always the best option as there are so many different symptoms that surface and side effects can be equally difficult. Care needs to be driven more by the non-medical plan and advanced assessments of the wide-ranging behaviors related to the diagnoses. Although there is no uniform approach to clinically managing behavioral symptoms of dementia patients, nonpharmacologic measures recommended by medical organizations include caregiver support interventions, activity planning and social and emotional support.

There is also the element of physical frailty that becomes more prevalent and can increase the behavioral and psychological symptoms of dementia. Alzheimer's disease and dementia are progressive disorders, and patients become more difficult to manage at home as they exhibit more fluctuating behavioral episodes, forgetfulness and agitation.

Dementia conditions produce a variety of severe social, economic and emotional impacts on caregivers and families. They report limited access to support services to address patient behaviors, as it is difficult to have routine assistance due to the dementia-related behaviors of the patient.

Niagara Hospice has developed a dedicated dementia care team while pursuing nationally-renowned certifications to ensure the highest level of care for patients and support for families.

One of our highly-experienced nurses, Keri Collins, is leading a dedicated clinical team for our specialized dementia care program. She recently earned the CADDCT (Certified Alzheimer's Disease and Dementia Care Trainer) designation from the National Council of Certified Dementia Practitioners (NCCDP). She is training other nurses, aides and social workers in a cohesive effort to enhance patient evaluation capabilities and expand treatment methods. 

We will continue to support other clinical staff members as they achieve other dementia-related certifications. We are also using additional diagnostic tools to more precisely identify the proper diagnosis of patients and develop individualized treatment and caregiver support plans.

Niagara Hospice has engaged with the Center of Excellence for Alzheimer's Disease (CEAD) at the State University of New York at Buffalo to serve as a partner with our clinical teams as well as a liaison and educational resource for primary care physicians. CEAD will provide expertise through cognitive assessments and treatment recommendations to enhance the patient's evaluation process and identify a thorough care plan.

We also have an ongoing relationship with Alzheimer's Association of Western New York, which has trained our home health aides and provided in-service educational presentations to our entire clinical and administrative staff. We are partnering with the association to provide vital family support services for our patients and will continue to share resources and referrals to expand our comprehensive, community-based dementia care program.

Too many patients in our communities are suffering with dementia and lacking the proper care and support they deserve to maintain their quality of life. Our program was designed to better predict and assess these patients' condition and their prognosis, ensuring their clinical teams are equipped to customize their care and provide more specific guidance to families and caregivers.

For more information, call 439-4417 or 716-HOSPICE.

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