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Caregiving and Public Administrators: Looking in the Mirror, Redefining Support

In our January column we discussed the challenges of preparing our communities for a growing population of older adults who are using Web 2.0 technologies. Here we focus on the challenges and opportunities facing public administrators in meeting the needs of caregivers.

According to the most recent data reported by the Family Caregiving Alliance and AARP in 2009, approximately 61.6 million Americans provided care for an older adult or someone who is ill or disabled in the past year. Against the backdrop of entering old age and planning for retirement, many baby boomers (who began turning 65 in 2011) are also providing elder care. In upcoming years older adults will become the largest proportion of the U.S. population than at any point in time. This historic occurrence suggests that a surge in the number of people who will be serving as caregivers is expected.

There are a range of formal, regulated caregiving settings including nursing homes, assisted living communities, adult care facilities and home care providers. Nevertheless, in the U.S. the majority of caregiving is largely done on an informal basis. Most of the demographic characteristics of caregivers are not surprising. Caregiving has historically been provided at home by women. Because of this, it has largely been outside of the realm of the public. According to 2012 National Alliance for Caregiving statistics, the average caregiver is likely to be a working professional woman in her late 40s who is caring for her mother. There is also a good chance she is taking care of more than one person. A third of caregivers care for two or more people, and one of these is likely to be a parent or another relative. Further, this caregiver is likely to be directly responsible for difficult tasks including bathing, toileting and dressing. The AARP provides extensive information about caregiving that may prove useful in better understanding the needs facing our aging communities.

Then there are the ‘new’ caregivers – men and LGBT individuals – whose growing numbers reflect changing socio-demographic population trends. The National Alliance for Caregiving and AARP report that an increasing number of men are caregivers. Although the type of care that men tend to provide, such as helping with finances or making care arrangements, is less physically intimate than care provided by women. We are just beginning to recognize the specific care and caregiving needs of the LGBT population. A 2010 MetLife report on LGBT older adults noted that equal proportions of males and females, 20% and 22% respectively, had recently provided care for adult friends and relatives. Notably, LGBT men were more likely to provide care than men in the general population. For further details about this population, view the MetLife report.

Caregiving also has a deep economic impact on caregivers and their communities. In fact, informal caregiving comprises a vast segment of our economy. An updated AARP Public Policy Institute report, Valuing the Invaluable: 2011 Update – Growing Contributions and Cost of Family Caregiving places the value of informal caregiving at $450 billion in 2009. As caregivers increase the amount of time they spend providing care, their employment opportunities can become more restricted, which directly impacts their financial security and retirement benefits.

Caregivers may be forced to reduce their work hours in order to provide care and this decision can have adverse consequence for the caregiver’s economic well-being. The 2011 Met Life Mature Market Institute Study of Caregiving Cost to Working Caregivers found that male caregivers are better able to reduce their hours of employment past mid-life without any adverse effect on their prior saving or pensions. The reverse has been true for women, who typically earn less than their male counterparts. Due to reduced hours, part-time positions, and family responsibilities, women may need their additional income for household expenses. Additionally, age and birth order may also have a significant impact. For example, an eldest sibling may determine that whoever lives in the closest proximity to the parent may have to assume the greatest responsibility for the caregiving, whereas others provide indirect forms of assistance. Invariably, caregiving falls to the individual who lives at home with the senior. Other family members may only offer temporary support such as taking the elder to a doctor’s appointment or on a weekend. More details are available at https://www.metlife.com/mmi/research/caregiving-cost-working-caregivers.html#key%20findings.

 

The Role of Public Administration in Addressing Caregiving Issues

As public administrators, one avenue to alleviating caregiver stress is to help our citizens who are or will be caregivers prepare for and manage their new roles. Some suggestions are presented here.

 

Develop, recognize and promote caregiver support programs:

Extended caregiving presents a complex and ever-changing set of challenges. Many caregivers are never quite prepared for this role they assume. For example, caring for a loved one with progressive dementia or Alzheimer’s disease can involve constantly shifting regimens of care. Public administrators can promote the development of programs that encourage both their own and community employers’ provision of flex time or family medical leave so that the caregiving employee may still actively remain in the workforce. Promoting access to support services, such as those available at http://www.usa.gov/Citizen/Topics/Health/caregivers.html and through http://www.medicare.gov/campaigns/caregiver/caregiver.html may provide resources unknown to many citizens.

 

Tailor messages and resources to differing caregiver needs:

Caregiving responsibilities are likely to differ according to proximity to the person being cared for and the socio-demographic characteristics of the caregiver. Tailoring messages, programs and policies that recognize the many faces of caregivers – female, male, LGBT, etc. – is vital to successful public policy. This remains particularly relevant for public agencies as they develop close working relationships with private caregiving service agencies.

 

Self-care for as a cost reduction strategy:

The additional responsibilities of caregiving can increase stress and consequently increase the likelihood of stress-related illnesses such as impaired cardiovascular health, hypertension, obesity, diabetes, and depression. A distal outcome of increases in these conditions is a greater burden on local health care systems. Public health programs that promote self-care among caregivers could potentially mitigate some of this burden. Local and state governments have the ability to develop innovative programs to reach out to caregivers to address this issue. Another aspect of promoting self-care for caregivers is supporting local initiatives that help reduce caregiver isolation. Caregivers can easily become isolated by their responsibilities. This is where Web 2.0 via social networking platforms are increasingly being used by caregivers to exchange information and stay in touch with their support networks (http://pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx; http://www.jopm.org/evidence/research/2010/12/05/a-multivariate-test-of-communication-competence-social-support-and-coping-among-hispanic-lay-caregivers-for-loved-ones-with-alzheimers-disease-an-extension-of-the-relational-health-communication/). Promoting universal Internet access for communities may help facilitate these on-line networks. Organizations such as Caring Bridge about creates support groups which make it easy for caregivers to connect, via media sharing news and to receive support from other family members. All inclusive day care facilities that not only provide medical services but are social outlets are also available. One such organization is PACE (Program for All-Inclusive Care for the Elderly, www.medicaid.gov). Another example of home health day care service is Visiting Angels that provide help with in-home care for the elderly. There are also programs that provide nutritional meals for home bound adults in many communities through organizations such as www.mowaa.org, www.city meals.org and www.lifnb.com.

 

Create awareness of resources:

There are many ways that the government can assist caregivers with the obligations they face with caregiving. Sites such as www.govbenefits.gov and www.usa.gov/Citizen/Topics/Health/caregivers.html provide information about programs and services for older adults, people with disabilities, and those with chronic health conditions and their caregivers. Similarly, raising citizen awareness of provisions in the Affordable Care Act, such as the voluntary long-term care insurance program Community Living Assistance Services and Support (CLASS), may prove beneficial. Although currently on hold, the CLASS will provide coverage for long-term care and provide a minimum of $50 per day cash benefit which can be paid to the individual family caregiver for their services.

Finally, it’s important to recognize that many public administrators are likely to be or will soon become caregivers. It is important to promote the messages internally and externally that are available in basic tool kits that deliver suggestions for how to manage caregiving.

 

Toolkit for survival

These are some suggestions to assist you in dealing with your caregiving roles:

1. Have a family meeting with the elderly parent and outline what needs to be done. Delegate important roles. Factors such as talking about finances, geographical locations, physical and emotional support are equally important for all concerned. Keeping the lines of communication open and clear are necessary. This should be done sooner than later, particularly when the parent is still alert and can offer their own views.

2. The importance of having a proxy, particularly if long term care is evident. Don’t leave anything to chance. These meetings should be conducted frequently. One meeting will not cover everything.

3. When a primary caregiver is identified, openly and candidly talk about the roles other siblings will perform. This could come from assisting financially, writing paperwork, and even relieving the primary caregiver to have some time for themselves so that they do not become “burnt out.”

4. If assistance is not forthcoming from other siblings or other relatives, the primary caregiver needs to verbalize their own needs and not act as a savior who may result in stress and sickness.

5. Find a support group. Remember that you are not the first individual to experience or to fulfill this role, and you will not be the last. Be proactive!!

6. Find a time to treat yourself, get your hair done or go to the mall for a few hours or enjoy some activity that you like. Get away, relax and rejuvenate yourself.

 

Being a primary care giver has its benefits. It allows both the elderly and the primary caregiver to develop a strong bond which may not have developed during times spent previously. The strong bond could very well impact the quality of the relationship that endures. Ultimately, being an aging friendly community is a goal many local governments seek. Getting there will require collaborative efforts among the public, nonprofit, health, and for profit sectors. These collaborations are beginning to emerge in part as a result of the increasingly mobile access to information and support. Public policy can reframe service delivery for this population by harnessing the power of the Internet and engaging its citizens through a variety of digital means. With luck, we’re all going to be counted among our senior populations. It is up to us to define how our service system will function in the 21st century.

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Authors: Maudry-Beverley, Ph.D., Assistant Professor, Department of Psychology, Medgar Evers College/CUNY; Christopher J. Godfrey, Ph.D. Director, Web 2.0 Interdisciplinary Informatics Institute Department of Psychology, Pace University; Hillary J. Knepper, Ph.D. Assistant Professor, Department of Public Administration, Pace University; Annie Chai and Linda Ollivierre, Pace University Research Assistants.

 

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