Caregivers
As a caregiver for a person living with Alzheimer’s disease, you may experience a range of emotions. The needs of the Alzheimer’s disease patient will often be placed before that of the caregiver, and this may cause a caregiver to neglect their own health. Caregiving can have a big impact on mental and physical health and wellbeing. Taking time to care for one’s own health – physically, mentally and emotionally – will help a caregiver have a better relationship with their loved one who is affected by Alzheimer’s disease.
The BOLD Public Health Center of Exellence on Dementia Caregiving provides tools and resources for public health agencies, individuals, and providers interested in learning more about dementia caregiving.
The first step as a caregiver is understanding your loved one's diagnosis and accessing resources to assure you maintain your physical and mental health, and have resources to support your loved one. A Caregiver Quick Guide was developed to assist in navigating the caregiving process once a diagnosis is recieved.
There is a wide variety of educational resources avaialbe to family caregivers about managing care of your loved ones and focusing on your own physical and mental health. While the list provided below is not inclusive of all resources available to caregivers, these resrouces are good starting points when you are first becoming a caregiver. Be sure to talk to your healthcare provider about your role as a caregiver, contact your local Area Agency on Aging and Disability, and connect with your local Alzheimer's Assocation or Alzheimer's Tennessee chapter if additional support is needed.
Alzheimer's Association Training and Education Center: The online training and education center offered by the Alzheimer's Association offers several free trainings for caregivers and basic dementia educaiton that may be useful for caregivers. Trainings include topics such as understanding the various stages of Alzheimer's disease, communication strategies, finanicial planning, and more.
Alzheimer's Tennessee Caregiver Academy: Alzheimer's Tennessee offers short videos through their Caregiver Acadamy series that provide expert medical information about dementia and practical caregiving tips. Trainings include engaging your loved one with dementia, TennCare information, and more.
Being a caregiver can be physcailly and mentally challenging, but too often caregivers neglect their own health needs. Support groups offer caregivers an opportunity to share their feelings, needs, and learn from others' experiences. Support groups exist throughout Tennessee and are held at various times and locations. The Alzheimer's Association and Alzheimer's Tennessee have support group information avaiable on their website.
Caregiving can impact an individual's mental and physical health, with over half of caregivers indicating that a decline in their health compromises their ability to provide care. Caregiving has been asociated with the folllowing health impacts:
- Elevated levels of depression and anxiety
- Higher use of psychoactive medications
- Worsened self-reported physical health
- Compromissed immune systems
- Incrased risk of early death (1)
The Centers for Disease Control and Prevention has developed a Caregiving Care Plan to asssit caregivers in managing their health and their loved one's health.
It is important that you discuss your role as a caregiver with your healthcare provider and the physical and emotional challenges that you might be facing. Your healthcare provider and other members of the care team may be able to assist you in managing your own physical and mental health, and assist you in locating community supports.
As Alzheimer’s disease or dementia progresses, there may come a time when full-time medical care or
advanced levels of care are needed. Facility based care may include homes for the aged, assisted living facilities, nursing homes, and continuing care retirement communities. Assisted Living Facilities, Homes for the Aged, and nursing homes are all licensed by the Tennessee Department of Health.
Assisted Living Facility: An Assisted Living Facility is a facility that provides daily care and services such as medication assistance, housekeeping, laundry, 24 hour supervision, security, onsite staff, and meals. Residents residing in these types of facilities can expect to have access to recreational activities, an apartment or room, and may share common areas. These facilities typically do not provide as much help for their residents as a nursing home would.
Home for the Aged: Facilities with usually less than 20 people, may also be called residential care facilities or group homes, are small private facilities that offer 24 hour staff available, provide personal care, and meals. Medical care is not typically provided on site.
Nursing Homes: Nursing homes, or skilled nursing facilities, provide a more advanced level of medical care than would be received at an assisted care living facility. Much like assisted living facilities, residents are provided with 24 hour supervision, laundry, and assistance with activities of daily living. Medical services such as rehabilitation services, physical therapy, occupational therapy, and speech therapy are also offered to residents if needed. Residents may go to a nursing home if they are transitioning from the hospital for recovery until they can be sent home. Most nursing home residents live there permanently due to the constant level of medical care required.
Individuals and caregivers need to understand what insurance will cover and what payment options exists. You may choose to talk to a lawyer that specializes in elder issues to assist you in understanding your payment options. More information about financing options can be found by clicking here.
It is also important to compare facilities to see which facility may be the best fit for you or your loved one. You may consider looking at the most recent facility survey information listed on the Health Facilities Commission's website. Other facility specific information may be listed on the Centers for Medicare and Medicaid Services website. This website might be useful in learning more about survey facilities, facility star rating, and quality measures. More information about locating and choosing a facility can be found by clicking here.
It is important to be familiar with the Long-term care Ombudsman, a program that provides assistance to Tennesseans residing in a long-term care facility. They can assist in answering questions, resolving problems, and advocating for solutions if issues occur at the facility. They may assist in understanding residents’ rights, the admissions process, understanding facility policies, etc. More information about the Tennessee Long-Term Care Ombudsman program can be found by clicking here.
Teresa Teeple
State Long-Term Care Ombudsman
Telephone: 615-925-1552
Email: Teresa.Teeple@tn.gov
Many caregivers have additional responsbilities such as work, childcare, errands, and self care. To assure caregivers and those lviing with dementia have their needs met, in-home care or respite care may be necessary. There are a few options available to Tennesseeans that assist with activities of daily living such as bathing, dressing, walking, and toileting, or instrumentl activities of daily living such as shopping, housekeeping, and transportation.
In-home Care
Some families may have the capabilities of sharing caregiving responsbilities or paying for private caregivers. Other families may need to access public resoruces to assist them with care.
TennCare CHOICES: TennCare CHOICES is a program for Medicaid eligable adults, 21 and older, with a physsical disability and seniors, age 65 and older. CHOICES offers services to help a person live in their own home or in the community. Services can be provided in the home, on the job, or in teh community to assist with daily living activities and allow people to work and be actively invovled in their local community.
OPTIONS for Community Living: A program that provides the elderly and adults with disabilitieies home and community based servces such as homemaker services, personal care, and home delivered meals. Call the Statewide Toll Free Line at 1-866-836-6678.
Click here to learn more about in home services.
Respite
Respite provides short-term relief to caregivers by offering a temporary reprieve from caregiving duties. Respite can be provided in the home, outside the home, at an adult day care program, in a hospital or facility setting such as a nursing home or an assisted living facility. Informal respite services can be provided by family or friends. Services may be free or offered on a sliding financial scale, provided through long-term care insurance, private insurance or our state’s TennCare CHOICES program. Respite resources are provided below.
Tennessee Commission on Aging and Disability