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The following information is available to the person who has a family member or friend who has Alzheimer's disease, which is very challenging to manage.


Alzheimer’s Disease persons and the people who care for them in Bergen County New Jersey

Introduction

The topic of this report is the assessment of and recommendations for community support for individuals who have Alzheimer’s Disease (AD) in Bergen County, New Jersey.  Included in this experience are the challenges, hurdles, and successes in attempting to provide good and safe supervised care for her as the changes Alzheimer’s disease progressed. These experiences are universally common for caretakers taking on the large challenge of caring for an adult with AD. A person diagnosed with Alzheimer’s has specialized needs and requirements that can be a large challenge for a spouse or a family member to handle. Many of these simple everyday behaviors, which are termed Activities of Daily Living (“ADLs”) such eating, bathing, dressing, walking, or independent activities of daily living (“IADLs”) such as shopping, cooking/meal preparation, laundry, cleaning, handling money/bills, exercise, etc.),can present a burden to the caretaker helping the individual with AD in addition, to their own life responsibilities, which may include all the above plus working at a job, attending school raising a family.[1] Other activities, in the medical category include arranging medical doctor consultations including specialized western medicine guidance, medicine prescribing/monitoring, MRI exams, as well as investigating what complementary medical modalities like East Asian medicine, Functional Medicine (nutrition and supplements), massage, Physical Therapy. Many of these items may or may not be covered by health insurance. The larger, potentially daunting financial requirements may include investigating what options for supervised 24 hour-a-day specialized, supervised medical housing, supporting medical consults throughout the progression of the disease may look like. Many times this long term care is not an option because of the expense.[2] A large number of caretakers will also need to know where to find and access community resources, social resources for their AD person.[2]  Since this daily grind can exact a toll for the caretaker, some kind psychological or psychotherapeutic support will be needed for the caretakers on an ongoing basis and especially if the Alzheimer’s patient experiences personality changes. Nationally known expert Carol Levine, a former family caregiver and director of the United Hospital Fund’s Families and Health Care Project (which studies family caregiving), commented:  Dementia is probably the most talked-about and written-about disease in America today. Yet, when it comes to one-on-one conversations with a family about a person with dementia, communication often breaks down. Family members want information about the disease, how to manage symptoms, and what to expect as time goes on. They want to know where to turn as urgent questions arise, frequently outside office hours.[3]

The community's geographic location and boundaries for this community paper are Bergen County, New Jersey. In 2015, the county had a per capita personal income in 2015 was $85,849, the fourth highest in New Jersey and ranked 45th of 3,113 counties in the United States.[10], 2011 census. The county’s landmass totals 233.01 square miles and parks comprise 9,000 acres, which gives it a suburban feel.  Bergen County is the most populous and therefore population-dense county in the U.S. state of New Jersey and has a population of 948,406 by way of 2017 projected census estimate.[4] Contrasted with its large and populous neighbor, the New York City Metropolitan area, Bergen County has no large cities and is composed of 70 smaller municipalities. It sits directly across the Hudson River from Manhattan.  Hackensack, the county seat, has the largest population with 43,010 residents (at the time of the 2010 census). It is for this reason that Bergen County was chosen the community area is a collective of many whole roughly equal-sized communities, all sharing federal, statewide and local resources. Any individual community in Bergen County would be typical of any other in the county. Bergen County is one of the wealthiest counties in the United States, with a median household income of $94,107 per the adjusted 2010 census, posted in 2017.[5]

In 2011 New Jersey enacted a law to establish the New Jersey Alzheimer’s Disease Study Commission, created by Public Law 2011, chapter 76, and was mandated to study the current issues in New Jersey associated with Alzheimer’s disease and to comprehensively assess the needs of residents related to the state infrastructure of services for the disease. The commission completed its work and submitted its report to the Governor and Legislature in August 2016.[1]

Demographics

The Family Caregiver Alliance’s 2014 State of the State in Family Caregiving Support [6]identifies that New Jersey has: 1,186,000 New Jersey residents over age 65 and that 8.3% of those people age 65+ have a cognitive issue due to Alzheimer’s or other dementias, stroke, etc. By calculations, his means that 98,438 seniors in New Jersey had a cognitive issue, particularly dementia.[5] Alzheimer's disease ranks number six in the top 10 causes of death in the United States and there is no prevention or cure [6]. The Alzheimer’s Association estimates that approximately 5.3 million Americans are now living with Alzheimer's disease. Nearly one in every three older adults who dies each year has Alzheimer’s disease or dementia. [7]

 
What resources are currently available in the community?

One great resource available in the community is the study process and report by the New Jersey Alzheimer's Disease Study Commission, which has been an organizing principle for the various organizations in Bergen County and throughout the state New Jersey since 2013 when work began on this project and 2016 when the report was submitted.

The Commission, created by Chapter 76 of the Public Laws of 2011, “was mandated to study the current impact and incidence of Alzheimer’s disease among State residents and make projections about the future impact and incidence; study the State’s role in long-term care, family caregiver support, and assistance to persons with early stage and early onset of Alzheimer’s disease; consider the capacity of public safety and law enforcement officials to respond to persons with Alzheimer’s disease and for these officials to have proper education and training; study the needs of persons with Alzheimer’s disease and their family members and caregivers, assess the availability and affordability of existing services, programs, facilities, and agencies to meet those needs, and make recommendations for improving, expanding, or changing them, as appropriate; gather and disseminate data and information relative to the care of persons with Alzheimer’s disease in order to provide health care professionals and governmental policymakers, as appropriate, with accurate data about the disease and its impact on these persons and their family members and caregivers; identify the adequacy, appropriateness, and best practice-based geriatric and psychiatric services and interventions; and consider such other issues as the commission may identify as necessary to ease the burden for persons with Alzheimer’s disease and their family members and caregivers in the State.” report to the Governor and Legislature in August 2016. [3]

Online Resources:

The Online Community: Prominent Advice and Information Sites


ALZ.org –National website and NJ Chapter

-  Online educating of:

-  What is Alzheimer’s how to identify it, changes, how it affects the brain, brain changes and 

   what to do about them

-  What is dementia, symptoms, causes, diagnosis, treatment, risk and prevention

-  Provides information on what AD is, how it develops, myths and facts about 
   Alzheimer's disease

-  Caregiving through the stages of AD

-  Current research, researchers


ALZ New Jersey – ALZNJ.org    Statewide organization

   Programs:

-  Care consult- respite care & wellness for the caregiver

-  Family support groups – community education

-  Always safe program – clinical trials

-  AD Helpline – caregiver conferences (locally held)

-  Caregiver conference

   Resources / Info:

-  About AD

-  Living with AD, managing, adapting

-  Legal and Financial planning

-  Managing challenging behaviors

-  Care for the Caregiver

-  Early age onset of AD

-  Fact sheets

   Public Events:

-  Walks, Gala, Benefits, etc

   Get Involved with ALZNJ.org:

-  Donate, volunteer, advocate

Actnowfoundation.org –

-  Support center, information, advocacy, awareness building, training, long term (end of life

planning) and education for families affected by Alzheimer’s and dementia. Two centers in       North Jersey – Jersey City and North Bergen, NJ.

Long term and supervised care options – 364 certified nursing facilities in New Jersey

They consist of these types:

-  1) Residential Care – 2) Independent Living -

-  3) Retirement housing- those who can live safely but need to have help managing their home

-  4) Memory Care – 5) Adult Day Care-

-  6) Assisted Care – help with some daily -housing, meals, medical care when needed -

-  7) Nursing homes – round the clock medical care -
-  8) Special Care Units (SCU’s)– living with other AD people, hospital-type setting -

-  9) Continuing Care Retirement Units – care through the whole spectrum of the AD stages

Commercial Long-term housing search/referral sites:

- “A Place for Mom”- commercial housing location/referral service.

- “The Senior Advisor”- https://www.senioradvisor.com/memory-care- housing location service.

-  Housing Referral Information through ALZ.org referral source service.

- https:www.Caring.com – Long-term housing referral & advice, memory care, etc.

-  Senior living.org - operates a hotline for guidance and resources for senior care living facilities and resources

-- https://www.state.nj.us/humanservices/

A great full spectrum of NJ government social services to the aging population. At 38 centers in 19 counties in NJ.

Of which is a subsidized day program that features a five-hour (minimum) program, one meal minimum (usually light breakfast + lunch), transportation to + from the site, support to families dealing with dementia, special staff training on managing dementia.

Christian Health Care Center- is a non-profit, health-care organization offering a continuum of high-quality senior living, short-term rehabilitation (post-acute care), and mental health services. They offer full spectrum day programs, independent living, assisted living, skilled nursing care, short-term rehabilitation (post-acute care), memory support, and mental health services. Wyckoff and Wayne, NJ.

Bergen County Hospitals

The Valley Hospital ---Ridgewood, NJ --- https://www.valleyhealth.com/

Bergen New Bridge Medical Center --- acute & long-term care and respite care  https://www.newbridgehealth.org/Paramus, NJ

Hackensack Meridian Health ---Hackensack, Pascack Valley and N. Bergen, NJhttps://www.hackensackmeridianhealth.org/locations

Engelwood Hospital, Engelwood, NJ--- https://www.englewoodhealth.org/

Holy Name Medical Center --- Teaneck, NJ ---https://www.holyname.org/

Hospitals in NJ (2017): 82.

Hospital Residents in NJ (2017)- 44,033.

Complimentary Medical Care:

Functional Medicine as an option for Functional Medicine patients

-Wertheimer Center for Functional Medicine Franklin Lakes, NJ. Options for Alzheimer’s and dementia patients   http://www.wertheimercenter.com/home.html

-Eden Medical – Functional Medicine practice by Dr. Djoyti Matthews, Mahwah, NJ

https://www.edenmd.com/

-Renew Integrative and Functional Medicine Dr. Allison Fox, MD, Maplewood, NJ http://www.renewdirection.com/

-Advanced Metabolic and functional Medicine Dr. Kenneth Storch Florham Park, NJ  https://amfmcenter.com/discovery-consultation.

NJ Licensed Acupuncturist listings:

NJ Licensing board - Consumer Licensing Verification via  --https://newjersey.mylicense.com/verification/-- List

NJ Preferred Acupuncturist Finder -- Acufinder.com https://www.acufinder.com/Find+Acupuncturist Acufinder

NJ Acupuncture/Oriental Medicine Schools

Eastern School of Acupuncture and Traditional Medicines- Bloomfield, NJ check out clinics sponsored by the school - http://www.esatm.edu/index.html

NJ Licensed Massage Therapists

NJ Consumer Affairs Board-- https://www.njconsumeraffairs.gov/mbt

College and University Departments of Geriatric Studies – Example:

The Stockton Center on Successful Aging at Stockton

The University of Stockton Center for Community Engagement (SCCE)


NJ Governmental Resources:

Here is the summary of all levels of governmental help for the Alzheimer’s and dementia population. One major result of the Commission study was colaboration and consolidation of resources. Organizationally, the NJ Department of Human Services (DHS) collaborates and partners with all levels of help in this summary (federal, State and community-based organizations).

1. Federal Programs such as Medicare provide health insurance for 65 years and older. Also for younger people with disabilities. The Family Medical Leave Act (FMLA) allows for limited unpaid leave time for caregiver to take time off work to provide care (such as doctor’s appointments, emergencies, etc). Older Americans Act is considered the foundation for adult’s with AD and their caregiver.  of NJ’s non-medical care in a community base community-based, nonmedical resources for older adults, including those with dementia their caregivers. Social Security pension often is the primary source of income for the AD and for early-onset of AD or dementia. Often the early-onset people receive disability care through Social Security Disability.

At the state level: the NJ FamilyCare: provides access to low or no cost health care. The following agencies are involved: NJ FamilyCare program, the Division of Medical and Health Services (DMAHS), Divisions of Aging Services (DoAS), Mental Health and Addiction Services (DMHAS) and Developmental Disabilities (DDD) provide comprehensive initiatives for long-term care, including Managed Long Term Services and Supports (MLTSS) which began in 2014, the Interim Managing Entity (IME) and Home and Community-Based Services (HCBS). The Division of Aging Services orchestrates with Older Americans Act which is the State Unit on Aging. In addition, DoAS administers the Congregate Housing Services Program, the Jersey Assistance for Community Caregiving (JACC), the Statewide Respite Care Program, Alzheimer’s Adult Day Services Program, and the Program of All-inclusive Care for the Elderly (PACE). DoAS also has orchestrates benefit programs like Pharmaceutical Assistance to the Aged and Disabled and Senior Gold Prescription Discount Program. Additionally as well as the LifelineUtility Assistance program and the Hearing Aid Assistance to the Aged and Disabled
program. The state office of New Jersey Family Leave Act (NJFLA) expands on the federal FMLA described above, NJFLA allows employees to take unpaid time in small increments for caregiving. The New Jersey’s Adult Protective Services (APS) Act with State prosecutors provides county level investigation of senior citizen abuse, neglect, and exploitation. For AD have no family or friend, the Public Guardian (OPG) provides guardianship services. Pharmaceutical and hearing aid assistance provided by The PAAD (Pharmaceutical Assistance to the Aged and Disabled), Senior Gold, and HAAAD (Hearing Aid Assistance to the Aged and Disabled) programs subsidize the costs of prescriptions and hearing aid devices.

At the County level, Area Agencies on Aging (AAAs): Often called “offices on aging,” these are the front-line is the primary advocate to the State and older adults and younger, disabled adults they serve. Primary functions of the AAAs are: providing information to the community about services and topics of interest, assisting people to obtain those services, and managing the provision of many of those services. The Aging and Disability Resource Connection (ADRC) network of the State Unit on Aging directly provide these services: home delivered and group (congregate) meals, home repair, legal services, caregiving supports, non-medical home care, homemaker, and housekeeping personal emergency response systems (PERS), evidence-based exercise and mobility classes, adult day care services, care management, money management, non-medical transportation for appointments, shopping, and recreation. The sheriff department: manage Project Lifesaver, a dementia tracking system. The Boards of Social Services provide casework,  can serve as the County Welfare Agency, which processes NJ, Family Care, NJ SNAP (Supplemental Nutritional Assistance Program), and TANF (Temporary Assistance for Needy Families) applications.

At the community level the Health Departments provide low- or no-cost medical services, such as dental care for senior citizens, influenza vaccines, cholesterol screening, provide nursing visits to homebound senior citizens. The first responders: Police, ambulance corps, and fire departments are frequently called upon to assist with everything from a wandering person to people who have fallen and need to be lifted up.

Finally, the private community-based agencies, faith-based communities and supports and workplace employee assistance programs and other employer-sponsored supports.


MORE TO COME SOON...….