IDOP 2008: Global Perspectives on Family Caregiving

United Nations International Day of Older Persons 2008:
Global Perspectives on Family Caregiving 

On Oct. 1, 2008, family caregiving advocates from different regions of the world shared challenges and progress at UN Headquarters in New York. The event was hosted by AARP, the National Alliance for Caregiving, and the United Nations Programme on Ageing in celebration of the UN International Day of Older Persons.

Across nearly every culture, family caregiving is a universal, time-honored, and frequently cherished obligation. Yet, the demands of caregiving often take a toll on caregivers' financial security, job security, and health.  Today's family caregivers face an array of new challenges, including smaller, more geographically dispersed families, competing childrearing duties, and longer life expectancy.

While some countries are implementing formal strategies to support caregivers, others are still in the early stages of defining the challenges. Progress and solutions are heavily influenced by resources and cultural traditions.

The United Kingdom-Pioneers of the Caregiver Movement

In the United Kingdom (UK), caregiver advocates have contributed to the passage of three separate acts of parliament and two national caregiver strategies. Caregivers now have the right to request needs assessments, supportive services, and a flexible work schedule. These successes resulted from advocates' ability to turn a private concern into a public issue, explained Baroness Jill Pitkeathley, a member of the UK House of Lords and former chief executive of Carers UK.

Baroness Pitkeathley stressed the importance of acquiring statistics about the number of caregivers and their economic contribution-and sharing that information with the media. Partnerships with disability and disease-specific organizations, which often require compromise, have been critical to advancing policy. Caregivers themselves have propelled the movement forward by donating their time and being willing to share their stories.

On the Agenda-Action in US Agencies

Advocates in the United States have successfully lobbied government agencies to integrate caregiving issues into their agenda, explained Gail Hunt, president and CEO of the National Alliance for Caregiving. The Centers for Medicare and Medicaid services recently launched a caregiving initiative, and the Veterans Administration now has a caregiving strategic plan for veterans. The Administration on Aging oversees a National Family Caregiver Support Program and also supports a "cash and counseling" model that provides vouchers to pay family caregivers.

In the private sector, MetLife Foundation just announced plans to sponsor an updated national caregiver survey, which the National Alliance for Caregiving first initiated in 2004. The 2009 survey will be expanded to include people caring for children with disabilities.

Latin America-Emerging on National Agendas

The demands of family caregiving are also gaining attention in Latin America, where many countries legally require families to provide for the welfare of elders. Dr. Martha B. Peláez, a board member of the Pan American Health and Education Foundation, noted the majority of caregivers are women, who often suffer economically and feel overwhelmed and depressed.

In 2006, the National Alliance for Caregiving invited teams from eight Latin American countries to a conference on caregiver issues. One year later, Chile introduced and approved legislation to provide financial support to family caregivers looking after loved ones who are bedbound. Peru introduced legislation to create a national day recognizing caregivers, and Argentina is working on convening a second Pan American conference on caregiving.

New Zealand's National Carers' Strategy

New Zealand launched its first national strategy for caregivers in April 2008, noted Laurie Hilsgen, director of Carers New Zealand. It includes measurable actions that government agencies must report on between now and 2013. The government developed the strategy in partnership with the New Zealand Carers Alliance, a broad coalition organized by Carers NZ.

Informational resources for caregivers are also being developed through public, private, and NGO partnerships. The quarterly Family Care magazine already has a readership of more than 100,000, and a new publication, Older Family Care, is generating excitement. Carers NZ recently introduced a monthly internet show, Family Care Radio, and is progressing partnerships to deliver a "watch and learn" cable television and internet-based channel for caregivers.  

Pakistan's Traditional Approach to Family Caregiving

In Pakistan, family caregiving is a social and cultural norm with deep roots in the Muslim religion, explained Hussain Jafri, Secretary General of Alzheimer's Pakistan. The traditional extended family structure remains strong, and caregiving responsibilities are divided among different family members. Pakistan's government does not cover long-term care, and institutional facilities are extremely rare and only for the destitute.

While caregivers are increasingly interested in accessing information about caregiving, there is major stigma around respite or adult day services. Even when wealthy families hire professionals, they always oversee that care within the home. However, as the number of expatriates grows and family structures change, Pakistanis may slowly become more open to new models of support.

A European Union Approach to Caregivers Issues

In European countries, 80 percent of long-term care is provided by informal caregivers who are predominantly women. A European Union (EU)-funded study, the EuroFamCare Project, found that-despite having a high willingness to care-family caregivers face significant challenges. According to project coordinator Dr. Hanneli Döhner, caregivers are overburdened, not well informed, and at high risk of falling ill themselves. They also face a loss of income, feel alone and unappreciated, and have difficulty combining caregiving with paid work.

An outgrowth of this study is Eurocarers, an EU-wide association of caregiver organizations-some countries having mature, developed caregiver groups; others in the process of starting an organization.  Eurocarers works to encourage the development of national caregiver organizations, promotes awareness of caregiving issues, provides information on policy developments and best practices, and is formulating a research agenda. The organization has developed guiding principles as well as a framework for quality outcomes to be presented in 2009.

Africa's Challenge-Meeting Needs Without Resources

Perhaps nowhere is the situation for caregivers more difficult than in Africa, where older persons frequently care for grandchildren who have been orphaned by HIV/AIDS. This places a health and economic burden on older Africans, many of whom need care themselves, noted William Babumba, head of Christian Aid programs in Africa. The situation is compounded by regional conflicts, as well as droughts, floods, famine, and a global food crisis.

Unfortunately, in the majority of African countries, pension schemes and social safety nets are virtually nonexistent. Programs from non-governmental organizations (NGOs) typically target the population age 15-45. Organizations like Christian Aid are looking at how they can better integrate elderly issues into existing programs.

Taiwan Province of China-Supporting a Traditional Caregiving Structure

Long-term care in Taiwan Province of China continues to be a family affair, with more than 90 percent of elders being cared for at home-usually by wives and daughters-in-law, explained Gary Chen, secretary general of the Taiwan Association of Family Caregivers. Eighty percent of caregivers are female, and more than half say they receive no assistance from other family members during the week.

As part of its 10-year long-term care initiative, Taiwan is developing supports for caregivers, such as respite care, counseling, training, and community services. Taiwan already provides family leave, as well as a monthly care allowance of US $150 for those with moderate or low incomes. It also has a caregiver support center that offers counseling and support groups. The Taiwan Association of Family Caregivers hosts an annual family caregiver day in November. 

Advancing the Rights of Caregivers and Care Receivers

Virtually every human being will be a caregiver and a care receiver at some juncture in life. For policy approaches to succeed, they must take into account the rights and image of both groups, stressed Dr. Alexandre Sidorenko, head of the UN Programme on Ageing, Department of Economic and Social Affairs.

NGOs remain the primary drivers of caregiving movements, with the UN playing an important role gathering best practices and designing policy options. The challenge is to translate these ideas into action-a goal for which all stakeholders must be held accountable.

For More Information:

AARP Office of International Affairs

Email: intlaffairs@aarp.org

Website: http://www.aarpinternational.org/

Post your comment (2500 character limit)

Your screen name will be displayed with your comment

Screen Name: email: