This is Chapter 6 of 50 in a summary of the textbook Handbook of Healthcare Delivery Systems. Go to the series index here.
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Chapter 6 Summary
Long-Term Care
Chapter Authors
Kathleen Abrahamson - Western Kentucky University
Karis Pressler - Purdue University
Some Commentary
This is a well written chapter. It provides good insight to the type of long-term care facilities, from the perspective of families and patients. It provides insight to funding, and different types of care models, and the culture within nursing homes.
1. Role of Families and Decision for Long-Term Care
What is caregiving?
It is difficult to quantify the number of family members who are "caregivers". "Caregiving" is difficult to define as it often may not include physical care, but "instrumental" tasks of life such as shopping, and running errands. As the majority of primary caregivers are women (with caring daughter for an elder mother being the most common combination), it may be difficult to differentiate formal "caregiving" for an elderly family member from that of routine tasks of life.
The chapter notes the difficulty of asking people about their role as 'caregiver'. "For example, a man may feel that making breakfast for his wife is a caregiving task, whereas a woman may perceive this work to be part of her routine responsibilities."
Asking those receiving care is also not an accurate indicator, as most care recipients report themselves to be less dependent than those providing the care report.
Sometimes the question "Who is the primary caregiver" may be helpful to ask.
The burden of caregiving
The burden of being a caregiver is different between sexes, cultures, periods of history, and the relationship between care recipient and caregiver. "A decline in the caregiver's health is the strongest predictor of an increase in caregiver burden".
Women typically take on being a caregiver in addition to other responsibilities. Men are more often to become caregivers in replacement of past roles - such as prior employment.
The burden of caregiving responsibilities increases with time, but the caregiver becomes more adapted and accustomed to the caregiver role.
Caregiver burden is mediated and may almost be eliminated in situations where the caregiver perceives high self-efficacy and a supportive social network.
What is Long-Term care?
Long-Term Care is an umbrella term referring to those who may be receiving care from families, home care, living in an assisted living facility, or at a nursing home.
The focus of long term care is "maintaining safety, mobility, and functional ability in terms of activities of daily living (ADL), such as bathing, eating, toileting, and dressing".
Over 90% of residents in nursing homes are over age 65. 46% over age 85. 72% are female.
The decision to move to a nursing home
In up to half of cases, the care recipient has no or little input into the decision to move to a nursing home. The decision is made by the caregiver, and often in a rushed instance precipitated by a medical crisis.
Nursing home admission increases as caregivers have increased burdens, in particular leading to "continous supervision, caregiver sleep distruptions, and a lack of caregiver leisure time". Younger caregivers report heigher levels of emotion-based stress, whereas older caregivers report higher physical burdens.
2. Nursing Home Operations
Currently 1.5 million Americans live in long-term care, and the number aged over 65 who will require institutional care is expected to double by 2030.
Half of long term care facilities have under 100 beds. 42% have 100-199 beds, and only 8% have over 200 residents. In America, two-thirds of these institutions are proprietary or for-profit. This is higher than other countries.
For-profit nursing homes are associated with lower quality of care than non-profit. Although for profit homes have higher wages, there are less staff per patient, and higher levels of nursing turnover.
Care is primarily delivered by Nursing Assistants (6 months of technical training). Medications and supervisory duties are by Licensed Practical/Vocational Nurses (LPN,LVN) (one year of technical training). Registered Nurses (RN) (at minimum two years of education), also have higher level supervisory duties, and may give more complex medications - such as intravenous.
There are 1.5 million full time caregiving staff an American nursing homes. Staff turn over can be as high as 100% for those providing direct care. Turnover is lower in institutions with better leadership, a consensus style administration, and those facilities that have consulted staff retentions specialists.
3. Family Involvement in Long-Term Care Facilities
Transition to a long-term care facility is often viewed as a 'decision of last resort', and may be associated with a 'myth of abandonment. In reality, family members who were highly involved in a patient's care prior to admission to a nursing home are likely to remain involved. Particularly if they live close to the facility, and if they were the primary caregiver.
Although the 'physical demands' of being a caregiver decrease after the care recipient moves to a long-term care, other demands such as financial management, legal assistance, and emotional burden increase for the caregiver.
The role of family members transitions as patients moves to long-term care. Families become experts in the patient's history and preferences. In a setting where everything is standardized, is regimented, and has ability to limit a patient's autonomy, the family works to ensure their relative's identity remains intact. The family becomes a 'watchdog' and 'advocate' to help "preserve the care recipient's self worth, personal identity, and dignity post institutionalization."
Families often judge the quality of a nursing home not based on technical competence, but on the quality of relationships between the staff and the resident, and the ability of staff to support a resident's self-esteem.
4. Assisted Living Facilities
Definition of exactly what an assisted living facility is proves problematic. There is a wide variation in facilities and regulations between states with facilities ranging from functional to luxurious. In general, assisted living facilities provide more autonomy to they're residents, however generally lack 24 hour nursing services. As a whole such facilities may not be as equipped to handle more complex patients.
Continuing Care Retirement Communities (CCRC).
There is growing interest in being able to provide facilities with progressively higher levels of care, from independent living, assisted living, nursing home, and dementia care. This allows individuals to 'age-in-place' and always remain confident their needs will be cared for. Such a community helps to ensure patients always are able to remain as autonomous as possible.
In the United States most CCRCs cater to white, educated individuals. An entry fee of $100,000 may be required with monthly fees from $1500 - $2000 (all 2002 pricing).
5. Financing Long-Term Care
98% of long-term care facilities in the USA accept reimbursement via Medicare, and or Medicaid. Reimbursement is based on the facility's case mix of services and patients.
Medicare reimburses only short term illness, or specific needs, in mid 2000s the per diem was $166 daily. Medicaid which covers long term reimbursement with a per diem of $116.
The largest percentage of funding for long-term care come out-of-pocket form the patient, then 35% is via Medicaid, and only 4% from insurance.
Assisted living facilities are generally not funded by Medicare nor Medicaid. Some states may allow Medicaid be used for those who cannot pay.
6. Long-Term Care Culture
Unlike other aspects of medicine which focus on cure and technological intervention, the focus of long-term care is preservation of functional status, management of chronic disease, and assistance of activities of daily living.
There is a continuous tension and balance between balancing the facility's goal of both providing care in a group setting while preserving individual patient autonomy and dignity - which is know to improve quality of life. Residents will work to maintain the appearance of healthy minds and body by "displaying their independence" while in public (such as refusing to use their knee brace or walker).
Meal time is a crucial ritual in the life of long-term care. Some residents may dress up for the occasion.
As long-term care residents loose contact with friends outside the facility, they create new friendships within the facility. However, widow/ers may be a stigmatized group within long-term care and experience less social interactions. In communities were widow/ers are the minority group to married couples, the widow/ers experience lower levels of participation in activities, and overall life well being.
Further Commentary
The chapter mentioned staff turnover is high as 100%. This seems like an alarming figure, and I'd like to know more about this. Is it like this in other countries. Why is it so high? Any established organization with turnover of 100% is a huge red flag in my opinion.