Formal caregiving includes getting professional level help from a provider such as a home health agency or long-term care facility. This can include help from skilled nurses, home health aides, certified nursing assistants, etc.
Most often however, individuals with Alzheimer's disease and related dementia are cared for through informal caregiving. Informal caregiving, often just referred to as "family caregiving," is when loved ones care for an individual on a part-time or full-time basis. Informal caregivers can include spouses, siblings, children or any family or friend.
Approximately 80% of individuals with Alzheimer's disease and related dementias still live in the community and are cared for by informal caregivers.1 In addition, there are 16.2 million unpaid, informal caregivers of individuals living with dementia, equaling 18.5 billion hours of unpaid work per year. 2 The economic value of the care provided by unpaid caregivers of those with Alzheimer's disease or other dementias was $233.9 billion in 2018.2 Tennessee has an estimated 439,000 informal caregivers caring for someone with dementia.2 In 2018 these caregivers provided 500,000,000 hours of unpaid care which was valued at $6.324 billion!2
When an informal caregiver is caring for both an older and a child, they are considered a sandwich caregiver. The number of individuals who are sandwich caregivers is growing as the baby boomer generation ages, leading middle-aged adults to care for both parents and children. Additionally, an increasing number of grandparents are caring for grandchildren. An older adult may be caring for another older adult such as spouse or sibling, in addition to raising grandchildren.
Caring for a child and an older adult with dementia presents unique challenges. It's important to be able to explain to the child the changes that are occurring with their loved one. There are many resources available to assist with explaining dementia to a child including children's books, videos, etc.
Although caring for a child and individual with dementia can be challenging there are benefits. Being around children can have a positive effect on older adults, especially those with Alzheimer's Disease and related dementia!
As you manage your role as a caregiver, you are also less likely to care for yourself by receiving proper nutrition, exercise, managing your own medications, and attending your own doctor's appointments. Caregivers of individuals with dementia have a higher stress burden than non-caregivers of a similar age. Caregivers of persons with dementia also have higher rates of depression than caregivers of individuals without dementia. These causes and others led Tennessee caregivers of individuals with dementia to have $2.91 million dollars in higher health care costs in 2018 than their non-caregiving counterparts.2
It is essential to take care of yourself in order to be able to successfully care for your loved ones. Taking time to care for yourself is not a luxury but a necessity. Think of being on an airplane - the safety video always shows that you must put your own oxygen mask on before helping those, even those you are caring for, beside of you.
There are several common ways for caregivers to care for themselves including asking for help from family members and friends, seeking out support groups, finding respite services and joining other caregiver support programs.
“Dementia does not suddenly end a person’s capacity to experience love or joy, nor does it end their ability to laugh. And, although your life may often seem filled with fatigue, frustration, or grief; your capacity for happier emotions is not gone either. Laughter might be called a gift to help us keep our sanity in the face of trouble.
There is no reason to feel bad about laughing at the mistakes a person who has dementia makes. They may share the laughter, even if they are not sure what is funny. Focus on ways you and others still share expression of affection with to person who has dementia. “(The 36 Hour Day, Nancy L. Mace, MA and Peter V. Rabins, MD, MPH)
Arthur Kleinman, M.D., the author of The Soul of Care states in his book, “Caring and caregiving give birth to love and redemption, but also to regret and inadequacy brought on by our failure to care perfectly.” Caregiving in general can be stressful, but especially caring for individuals with dementia. Know that as a caregiver, you are far from alone, and help is available.
All caregivers deserve a break, relief, and support from those around them and their community.
Respite refers to getting a short period of rest from something difficult. For caregivers, respite is often provided through informal support such as from other family members but is also offered through many formal support groups. This type or formal care is referred to as "respite care." Respite care is covered by some insurance companies and is also offered for eligible individuals through TennCare's Long Term Support and Services and through Tennessee's participation in the National Family Caregiver Support Program. Other organizations offering respite include the Tennessee Respite Coalition and adult day service centers.
Reach out to your loved one's insurance company and or AAAD to figure out what respite services you have access to.
A complete list of registered Adult Day Centers in the state of TN can be found here. You can also visit our Local Resources page to find resources in your area.
Caregiver support groups exist for almost any disease, including for dementia and Alzheimer's disease. Caregiver support groups provide a unique opportunity for caregivers to discuss their situations with those facing similar challenges. Caregivers can share experiences, advice, and provide support for each other. Caregiver support groups often lead to bonds that exist outside of the care group meetings, and even when the caregiver's role ends.
“Family members experience many feelings as they care for a person who has dementia. They feel sad, discouraged, and alone. They feel angry, guilty and hopeful. They feel tired and depressed. In the face of reality of a chronic illness, emotional distress is appropriate and understandable. Sometimes families of people who have dementia find themselves overwhelmed by their feelings. Human feelings are complex, and they vary from person to person.” “(The 36 Hour Day, Nancy L. Mace, MA and Peter V. Rabins, MD, MPH)
There are Alzheimer's disease and related dementia caregiver groups across the state of Tennessee. Some are hosted by organizations, churches, or long-term care facilities! The Alzheimer's Association maintains a list of caregiver groups on their website. Type in your zip code to find an in-person support group near you. You can also check out our Local Resources page for resources in your area.
Alzheimer’s Tennessee also has a list of caregiver support groups by county listed on their website and offers a monthly telephone support group for caregivers who may not be able to leave their home for an in-person support group.
If you are unable to attend in person caregiver support meetings, look into joining an online support group! There are many dementia online support pages on social media such as Facebook. Some organizations also have online support groups on their website, including Alzheimer's Association which hosts ALZConnected. Alzheimer’s Tennessee also offers a monthly telephone support group for caregivers who may not be able to leave their home for an in-person support group.
If you can't find a good fit for you, look into starting your own caregiver support group! There are so many individuals affected by dementia in every community in our state. Reach out to your local AAAD, other individuals online, religious groups, or talk to your doctor's office to start a group in your community!
Alzheimer’s Tennessee provides Caring and Coping Workshops for caregivers learn more about Alzheimer’s and Related Dementias and important caregiving strategies to support their loved ones living with a diagnosis. To learn more about Alzheimer’s Tennessee Caring and Coping Workshops click here.
Alzheimer’s Tennessee also has an online Caregiver Academy which provides short videos on a variety of topics such as wandering, bathing, person-centered care, home safety tips and more! To view all of Alzheimer’s Tennessee’s Caregiver Academy videos, click here.
Nashville Public Television (NPT) has an Aging Matters documentary series which includes a segment on caregiving. Click here to watch Aging Matters for free. Other videos on caregiving can be found on the internet with specific tips and techniques for in home, residential community, or memory center caregiving.
This Page Last Updated: October 11, 2021 at 1:35 PM