Journal of Gerontological Nursing

EDITORIAL 

Partnerships Meeting the Challenges of Informal Caregiving

Hilke Faber, MN, RN, FAAN

Abstract

One of the most important challenges facing our nation is the development of rational and humane ways of meeting the long-term care (LTC) needs of people with chronic illness or disability. While the majority of the population needing this care are the frail elderly, children and young adults with chronic conditions also may need LTC.

Only a small portion of dependent elderly (i.e., those needing some assistance to perform basic activities of daily living) reside in institutions - less than 20% are in nursing homes, while another 3.7% live in board and care homes providing less intensive care than nursing homes. The remainder of the dependent elderly - over three-quarters of them - live in the community.

Of the dependent elderly in the community, only 5.5% rely exclusively on formal LTC services for support, while another 20% draw upon both formal and informal support services. The striking fact is that nearly three-fourths of all dependent elderly persons in the community, or about half of all elderly with LTC needs, only receive assistance from family and friends on an informal basis. It is these family members - particularly the wives, daughters, and daughters-in-law of frail elders - who along with friends and neighbors, are the backbone of informal caregiving.

Family caregivers are not experts or saints. They are not necessarily people with too much time on their hands or who have always been the "supportive" one in the family. A family caregiver is.. .you - someone who provides unpaid assistance to someone else who is ill or disabled. Every family is different - different needs, different circumstances, different resources. Not every community offers the same services. Usually urban and suburban residents have a greater variety of choices than rural residents.

Unfortunately, the informal caregiving network, which has strong roots in the American tradition of families caring for their elder members, is itself a fragile system threatened by a variety of different forces. Some of the important demographic trends include:

*The number of elderly needing LTC will increase significantly over time ;

*There may be fewer informal caregivers available to meet these needs;

*Many informal caregivers are themselves elderly;

* Many caregivers are not in good health;

*Many caregivers have low incomes.

Further, numerous studies have shown that providing informal care to frail elders can be very physically and emotionally demanding and can place great strain on caregivers. In fact, it is the build-up of these pressures that often leads to the caregiver's ultimate inability to continue providing care and to the institutionalization of the frail elder.

Given these many challenges, it seems that the focus for nursing interventions needs to be directed toward empowering, supporting and enhancing the abilities of informal caregivers so that families can remain intact and as a unit as long as possible. With this goal in mind, the American Nurses Association (ANA) and the American Association of Retired Persons (AARP) have joined forces to address the significant issues affecting older persons and their caregivers. They are working together to make certain that nurses, wherever they work, have adequate information to advise older persons and their informal caregivers about the resources available to them.

Nurses are recognized as being key to better planning for LTC and health care decision-making. Nurses are a vital link in providing the important information and resources to help make a difference in the lives of older adults. Too often, older persons and caregivers don't recognize the need or don't know where to turn for assistance. Professional nurses can help bridge that gap through their patient caregiving, advocacy and educator roles. ANA and AARP…

One of the most important challenges facing our nation is the development of rational and humane ways of meeting the long-term care (LTC) needs of people with chronic illness or disability. While the majority of the population needing this care are the frail elderly, children and young adults with chronic conditions also may need LTC.

Only a small portion of dependent elderly (i.e., those needing some assistance to perform basic activities of daily living) reside in institutions - less than 20% are in nursing homes, while another 3.7% live in board and care homes providing less intensive care than nursing homes. The remainder of the dependent elderly - over three-quarters of them - live in the community.

Of the dependent elderly in the community, only 5.5% rely exclusively on formal LTC services for support, while another 20% draw upon both formal and informal support services. The striking fact is that nearly three-fourths of all dependent elderly persons in the community, or about half of all elderly with LTC needs, only receive assistance from family and friends on an informal basis. It is these family members - particularly the wives, daughters, and daughters-in-law of frail elders - who along with friends and neighbors, are the backbone of informal caregiving.

Family caregivers are not experts or saints. They are not necessarily people with too much time on their hands or who have always been the "supportive" one in the family. A family caregiver is.. .you - someone who provides unpaid assistance to someone else who is ill or disabled. Every family is different - different needs, different circumstances, different resources. Not every community offers the same services. Usually urban and suburban residents have a greater variety of choices than rural residents.

Unfortunately, the informal caregiving network, which has strong roots in the American tradition of families caring for their elder members, is itself a fragile system threatened by a variety of different forces. Some of the important demographic trends include:

*The number of elderly needing LTC will increase significantly over time ;

*There may be fewer informal caregivers available to meet these needs;

*Many informal caregivers are themselves elderly;

* Many caregivers are not in good health;

*Many caregivers have low incomes.

Further, numerous studies have shown that providing informal care to frail elders can be very physically and emotionally demanding and can place great strain on caregivers. In fact, it is the build-up of these pressures that often leads to the caregiver's ultimate inability to continue providing care and to the institutionalization of the frail elder.

Given these many challenges, it seems that the focus for nursing interventions needs to be directed toward empowering, supporting and enhancing the abilities of informal caregivers so that families can remain intact and as a unit as long as possible. With this goal in mind, the American Nurses Association (ANA) and the American Association of Retired Persons (AARP) have joined forces to address the significant issues affecting older persons and their caregivers. They are working together to make certain that nurses, wherever they work, have adequate information to advise older persons and their informal caregivers about the resources available to them.

Nurses are recognized as being key to better planning for LTC and health care decision-making. Nurses are a vital link in providing the important information and resources to help make a difference in the lives of older adults. Too often, older persons and caregivers don't recognize the need or don't know where to turn for assistance. Professional nurses can help bridge that gap through their patient caregiving, advocacy and educator roles. ANA and AARP are providing nurses with the information they need to be effective advocates and educators in LTC.

Contact the closest AARP office near you for more information on caregiving. After all, knowledge is power. AARP wants you to share that power so that both caregiver and recipient will benefit.

10.3928/0098-9134-19960101-03

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