Celebrating Our First Parkinson’s Disease Bootcamp Warriors!

RVNAhealth Parkinson's Disease Center Bootcamp 2023

On October 9th six brave Parkinson’s Warriors completed RVNAhealth’s first Parkinson’s disease (PD) Bootcamp program. These six clients spent eight weeks coming to our Ridgefield Center of Excellence twice a week to participate in our innovative PD Bootcamp. An intensive eight-week program, PD Bootcamp only takes six participants at a time, providing Parkinson’s patients with in-depth education about their disease, disease management, and exposing them to over sixteen different types of exercise. This first group of ‘bootcampers’ was funded by a grant from the Connecticut Chapter of the APDA. Graduates they are, but we like to call them “warriors!” Read on learn why…

About the RVNAhealth Parkinson’s Disease Center

Since the Parkinson’s Center launched in April of this year, the response from the Parkinson’s community has been overwhelmingly rewarding. “It’s been an amazing experience creating a formal program to provide vital Parkinson’s disease education, exercise programs, and support and resources. I am grateful to the entire Parkinson’s Center team for their tireless dedication. And of course, my congratulations go out to our first Bootcamp warriors who trusted in us and our program,” said Gigi Weiss, Director of RVNAhealth Rehabilitation Services and the Parkinson’s Center.

If you haven’t already heard about the Parkinson’s Center, check out our website and watch our spotlight video below!

PD Bootcamp…Dedication, Commitment, and Tools for Life

PD Bootcamp is designed as a small, intensive education and exercise program for those affected by Parkinson’s disease. Participants met together, with our RVNAhealth trained Parkinson’s specialists twice per week over the course of eight weeks. Our goal is to create relationships with our participants, deliver personalized education and plans, and equip them with the tools needed to live their best life.

Participants attended two exercise classes each week, with each class introducing them to a new type of exercise. Exercise classes included dance, boxing, Pilates, strength training, high intensity interval training, tai chi, and more! The goal in introducing so many different types of exercises is to help individuals find the exercise they enjoy most. “The only medically proven method of delaying the progression of Parkinson’s disease is exercise. So, what’s the best exercise to do? The one you enjoy and will keep up with!” says Kate Campbell, Doctor of Physical Therapy and Parkinson’s Center Program Manager. “Through our format, we really get to know these individuals and can best educate and guide them toward living their best life and taking control against their Parkinson’s.”

Bootcamp participants also attended a weekly educational session covering topics such as sleep, mental health, medication management, speech and cognition, and nutrition. PD Bootcamp workbooks provided reference materials and worksheets for individualized learning plans.

Parkinson's disease bootcamp
RVNAhealth Parkinson's disease bootcamp
RVNAhealth Parkinson's disease bootcamp
RVNAhealth Parkinson's disease bootcamp
RVNAhealth Parkinson's disease bootcamp

In the Words of Our Parkinson’s Disease Bootcamp “Warriors”

Thank you and congratulations to our first Bootcamp Warriors. We are grateful to share a few parting words from some of our graduates about their experience. If you have any questions about the Parkinson’s Center or its programs, please visit the RVNAhealth Parkinson’s Center website, join our newsletter subscription list, or email us at PCinfo@rvnahealth.org.

“Over the last year my PD has accelerated rapidly. Perhaps it is not noticed by others, but I can feel the loss of muscle, the exhaustion, each slur of words, every scuff of foot, forgetfulness, constant pain, and confused action. The only hope a Parkinson’s patient has to forestall a total and deliberate, debilitating decline into dependency is exercise. Fortunately, this RVNAhealth Bootcamp program addresses this and more! The RVNAhealth Parkinson’s Center and its PD Bootcamp program demonstrates how to interweave exercise and information into your daily schedule. It is a lot to do – but it gives you control, and a confidence you cannot find elsewhere! This program helps guide those diagnosed with Parkinson’s disease through the myriad of symptoms they must confront and gives them the knowledge and defensive tools needed to continue on and live a purposeful life.” – Barbara

“I just finished the PD Bootcamp at the RVNAhealth Parkinson’s Center. What a great program and what a great experience for someone like me who is relatively newly diagnosed. Kate, Andrea, and Meg led a thorough program that kept me engaged for the entirety of the program. You were so visionary in designing and offering this program. I am now more aware of my disease what I can expect and the things I can do to help me cope with the Curveballs of Parkinson’s. I hope you are able to include this in your regular programming because it is so needed.” – Joe.

 

Congratulations again to all of our first Bootcamp Warriors!

Are You Prepared? Advanced Care Planning 101

advanced care planning

This month, November, is Hospice and Palliative Care Month. In recognition, we strongly encourage all who haven’t initiated discussions about Advanced Care Planning to take advantage of November as a steppingstone. If you’ve already done your planning – congratulations on this important step – just be sure to review and update your directive to reflect any changes in your preferences or medical circumstances.

What is Advanced Care Planning?

Advanced care planning is a process that involves making decisions about your future healthcare preferences in advance, particularly if you become unable to make decisions for yourself due to illness or incapacity. The primary purpose of advanced care planning is to ensure that your medical care aligns with your values, beliefs, and personal preferences. It also helps reduce the emotional burden on your family and healthcare providers by providing clear guidance.

Key components of advanced care planning include:

  • Advanced Directive (also called Healthcare Directive or Living Will): This document allows you to specify your preferences for medical treatments, such as life-sustaining measures, resuscitation, and organ donation. It outlines the circumstances under which you want specific treatments or interventions and when you do not.
  • Appointment of a Healthcare Proxy or Agent: In some cases, you can designate a trusted individual to make medical decisions on your behalf if you’re unable to do so. This person is often referred to as a healthcare proxy or agent.
  • Discussion and Communication: The process involves open and honest discussions with your loved ones, healthcare providers, and, if you’ve appointed one, your healthcare proxy. These conversations are crucial to ensure that your wishes are known and understood.

Resources for Advanced Care Planning

Creating an advanced directive is an important step in ensuring that your healthcare preferences are documented and followed when you cannot make decisions for yourself. There are various resources available to help you create an advanced directive:

  • State-Specific Forms: Most U.S. states have specific forms or templates for advanced directives that are legally recognized. These forms are usually available through state government websites, local hospitals, or legal aid organizations. They are designed to meet the legal requirements of your particular jurisdiction. Connecticut’s starting point webpage for Advanced Directives can be found here.
  • Online Resources: Numerous websites and organizations offer advanced directive forms and guides. Some popular resources include:
    • CaringInfo: This is a program of the National Hospice and Palliative Care Organization (NHPCO) that provides free state-specific advanced directive forms and information.
    • Five Wishes: This is a user-friendly advanced directive document that is accepted in most U.S. states. It goes beyond medical decisions to address emotional and spiritual issues. You can purchase a copy online.
    • AARP: The American Association of Retired Persons (AARP) offers advanced directive forms and information that can be customized to your needs.
  • Consult an Attorney: If you have complex medical preferences or want legal advice, consider consulting an attorney who specializes in healthcare or estate planning. They can provide guidance, answer your questions, and ensure that your advanced directive complies with your state’s laws.
  • Hospitals and Healthcare Providers (including RVNAhealth!): Many hospitals and healthcare providers have resources available to help you create an advanced directive. They may offer informational brochures, access to standard forms, or guidance from social workers or ethics committees.

Remember that creating an advanced directive is an important legal and healthcare document, and it’s essential to follow your state’s specific guidelines to ensure its validity. Be sure to share a copy of your advanced directive with your healthcare provider, family members, and your chosen healthcare proxy or agent, if applicable.

Contact RVNAhealth for More Information

Begin the dialogue regarding Advanced Care Planning by reaching out to our team at RVNAhealth. We’re here to assist you in starting these conversations proactively, without the urgency of a crisis. We provide informative materials to assist you, and our team members are available for discussions. Planning ahead is a choice that no one has ever regretted. In fact, it’s a precious gift you can give both to yourself and your loved ones. To learn more, contact us at 203-438-5555, or visit our website.

A Primer on Dementia and RVNAhealth Support Services

Dementia and Alzheimer's

While former President Jimmy Carter has made headlines about his current journey on hospice care, the former First Lady, Rosalynn, has also been notably in the news. In May of this year, the family announced that Mrs. Carter has dementia. Like her husband’s hospice news, the former First Lady’s diagnosis shines a further light of awareness on the topic of dementia and, in particular, on caregivers. Carter has been a long-term advocate for mental health and caregiving issues, including dementia.

Understanding the Basics…Dementia vs. Alzheimer’s

Dementia is a broad term used to describe a group of cognitive impairments (including Alzheimer’s disease) that interfere with an individual’s daily life and functioning. It is not a specific disease itself, but rather a syndrome characterized by a decline in cognitive function beyond what might be expected as a result of normal aging. Common symptoms of dementia include memory loss, difficulties with problem-solving, language and communication problems, and changes in mood and behavior.

What Causes Dementia?

There are various underlying causes of dementia, with Alzheimer’s disease being the most common. The exact cause of dementia depends on the specific type, but in general, it often involves damage to brain cells or a decrease in the brain’s ability to function correctly. This can result from various factors, including:

  • Alzheimer’s disease: Abnormal protein deposits in the brain, such as amyloid plaques and tau tangles, contribute to cognitive decline.
  • Vascular dementia: Reduced blood flow to the brain, often due to strokes or small vessel disease, leads to cognitive impairments.
  • Lewy body dementia: Accumulation of abnormal protein deposits (Lewy bodies) in the brain.
  • Frontotemporal dementia: Degeneration of the frontal and temporal lobes of the brain, leading to changes in behavior and personality.
  • Other causes: Dementia can also result from conditions like Parkinson’s disease, Huntington’s disease, traumatic brain injury, or infections.

The Statistics

Many find the staggering statistics around dementia surprising. According to the Alzheimer’s Association, some of the statistics include:

  • One in three of seniors, ages 65+, dies with a form of dementia.
  • It is the fifth leading cause of death for older adults in the U.S.
  • Specific to just Alzheimer’s, the lifetime risk at age 45 is 1 in 5 for women and 1 in 10 for men.
  • In 2023, all dementias will cost the nation $345 billion and by 2050, costs could rise to nearly $1 trillion.

RVNAhealth Dementia offerings

Caregiving in the Dementia Equation

At the announcement of the former First Lady’s dementia diagnosis, the family stated “As the founder of the Rosalynn Carter Institute for Caregivers, Mrs. Carter often noted that there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

The Alzheimer’s Association estimated that in 2022, unpaid caregivers (family, friends, neighbors) provided an estimated 18 billion hours of care (or an average of ~26 hours/week) for individuals with dementia. While the impact and care needs for individuals affected by dementia are multifaceted, we cannot forget the needs of dementia caregivers. Caring for a loved one with dementia can be an emotionally, physically, and mentally challenging experience, and it can take a significant toll. It’s crucial for caregivers to prioritize self-care and seek assistance when needed to maintain their own health and well-being.

RVNAhealth Dementia Services and Support

Dementia is a progressive condition, meaning that symptoms tend to worsen over time. There is no cure for most types of dementia, but some medications and therapies can help manage symptoms and improve the quality of life for individuals with dementia. Caregiver support and appropriate healthcare are crucial for those affected by dementia.

Early diagnosis and intervention can make a significant difference in managing the condition and improving the well-being of both patients and their families. RVNAhealth offers a variety of patient and caregiver support services for dementia. Please see some of our patient and caregiver support services below. Click here if you would like to join our dementia-specific mailing list for updates on RVNAhealth dementia education, events and support offerings. Or, if you have any questions, please contact us by email: intake@rvnahealth.org, or phone: 203.438.5555.

RVNAhealth Dementia Support Services:

  • Dementia Caregiver Support Group: In support of the challenges and needs facing the caregiving population, RVNAhealth offers a Dementia Caregiver Support group monthly, in coordination with the Alzheimer’s Association. Held on the fourth Monday of every month from 11:00am-12:00pm at the RVNAhealth Ridgefield office, the caregiver support group aims to create a safe, confidential, supportive environment and a chance for participants to develop informal mutual support and social relationships. They also educate and inform participants about dementia and help participants develop methods and skills to solve problems.
  • Personal Medical Alert Services: At the early stages of a dementia diagnosis, when round the clock care may not be necessary, a personal medical alert device can provide caregiver peace of mind for the health and well-being of a loved one. RVNAhealth offers a variety of in-home and on-the-go Lifeline device options.
  • Rehabilitation Services: Rehabilitation services help patients extend their independence in activities and speech.  Occupational and Speech Therapists help to stimulate cognitive and fine motor skills while providing practical tools to maximize activity, safety, and enhance quality of life.
  • Nutrition Services: Nutrition services for dementia, offered by our Registered Dietitian, are aimed at promoting appetite, healthy body weight, and positive engagement with food, while balancing each patient’s unique nutritional needs.
  • Private Duty Caregivers: Available as hourly or live-in, our private duty caregivers can provide a variety of non-medical personal and house-hold assistance based upon a patient’s evolving need.
  • Private Duty Nursing: Providing immediate access to care for medical needs and treatments not covered by insurance.  From medical care in the home, to medication preparation and administration, to peace of mind medical assessments and vital sign checks when getting to the doctor is too difficult – Private Duty Nurses provide immediate and customized care in coordination with a patient’s doctor.
  • Palliative & Hospice Care: For advanced dementia disease, palliative and hospice care with RVNAhealth provides in-home comfort care and peace to patient and family. An experienced team consisting of medical, social, spiritual, and family support volunteers bring their expertise and experience in dementia care to families and their loved ones.
  • Certified Dementia Practitioner (CDP) Program : RVNAhealth proudly offers Certified Dementia Practitioner training to its staff. CDPs are equipped with training and tools to help deliver appropriate and effective communications with patients. This additional expertise enables improved communication and assistance between our team, the caregiver, patient, and family.