Author: Gauri Chande (President and Owner)
Informal caregivers provide most of the care for the aging population living with dementia. As much as 7% of adults aged 60 and older suffer from dementia. Informal caregivers are a critical resource to their care recipients and an essential component of the health care system in the United States. An informal caregiver, often a family member, provides care, typically unpaid, to someone with whom they have a personal relationship. According to an AARP study, the estimated number of informal caregivers for people aged 50 and older in the United States is 34.2 million. In 2017, family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion. Caregivers often express satisfaction with their caregiving role and their efforts can allow those with dementia to remain at home rather than rely on institutional care.
If you are one of the informal caregivers, you are well aware that caring for a loved one can be one of the most rewarding experiences in life, but it can also be one of the most challenging, especially to your own health. Providing informal care to patients with dementia can place a significant amount of pressure on an individual. Some common causes of caregiver stress include:
- Shifting responsibilities: This is particularly relevant when caring for an elderly parent with dementia. It can be hard to see someone who has traditionally been the caretaker of the family in need of care, often with the most basic activities of daily living such as bathing, eating, and getting dressed. Seeing one’s loved one helpless and vulnerable can be a source of added stress for family members.
- Lack of control and fear of uncertainty: Many caregivers have concerns about being able to effectively manage their loved one’s care due to limited resources and lack of skill.
- Unfulfilled expectations: Many caregivers expect their involvement in care to have a positive impact on the health and well-being of their loved ones. This expectation is often left unfulfilled in caring for patients with progressive degeneration such Parkinson’s Disease and Alzheimer’s Disease.
- Isolation: It is often not safe to leave people who suffer from dementia alone. Their need for constant care and supervision frequently results in the caregiver being tied to their roles and unable to focus on family, work, and responsibilities outside of their care recipients. It further makes it difficult to pursue activities which would bring respite and pleasure.
- Other factors: Caregivers often develop a sense of guilt if they feel that they are not making their loved one as comfortable as they could be, even if there is really nothing else that can possibly be done.
Stress Management and Preventing Burnout
There are tools and resources you can turn to manage stress and prevent caregiver burnout as detailed below:
- Educate yourself: New caregiving skills might become necessary as dementia progresses. The Alzheimer's Association offers programs to help you better understand and cope with the behaviors and personality changes that often accompany dementia. Speaking with care partners such as doctors, nurses, and social workers can provide valuable insights into setting realistic expectations and preventing feelings of guilt.
- Find time for yourself: Put aside time to pursue activities which bring you pleasure and improve your health such as exercise and social gatherings. It is helpful to remember that taking care of you is not a luxury but a necessity.
- Consider joining a caregiver support group: Sharing experiences with others in a similar situation can help alleviate feelings of stress, find helpful resources, and reduce feelings of isolation.
- Find support in community resources: Caregivers often place unreasonable burden on themselves as they consider caring for their loved one to be their exclusive responsibility. It is important to remember that there is a wide range of community resources available to help share this responsibility. Adult day care centers, visiting nurses, meal assistance, and in-home assistance are just some of the services that can help manage everyday tasks.
At Homewatch CareGivers, we focus on preserving function, promoting independence, and improving quality of life for clients and their families navigating dementia. Our caregivers are certified and experienced in working with dementia and cognitive decline. They provide assistance with both activities of daily living (ADLS), such as bathing, toileting, hygiene, dressing, ambulation, and Instrumental Activities of Daily Living (IADLS) such as companionship, meal preparation, light housekeeping (including laundry and transportation services for errands and appointments).
Call 301-895-9762 or click here to learn more about how Homewatch CareGivers can help you with dementia caregiving needs.
Valuing the Invaluable: 2019 Update. AARP Public Policy Institute. https://www.aarp.org/content/dam/aarp/ppi/2019/11/valuing-the-invaluable-2019-update-charting-a-path-forward.doi.10.26419-2Fppi.00082.001.pdf
Caregiving in the US: 2020 Report. AARP Research Report. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf
Spurlock WR. Spiritual well-being and caregiver burden in Alzheimer’s caregivers. Geriatr Nurs. 2005;26:154–161.