Data Needs
In Older Americans 2004, the Federal Inter-agency Forum on Aging-Related Statistics
(Forum) identified 12 areas where more data were needed to support research and
policy efforts. These areas included substantive topics as well as improved
data collection methods and reporting. In this report, the Forum decided to
focus the “Data Needs” section more narrowly on topics that could become new indicators,
or improve existing indicators, if more or better data were available. The
following six topics have been identified by the Forum as priority areas for indicator
development: caregiving, elder abuse, functional limitations and disability, mental
health, pension measures, and residential care. Either more national data are needed
on the topic or there has been difficulty reaching consensus on relevant definitions
and measurements.
Caregiving
There is growing recognition that family caregivers of older people with disabilities
and/or moderate to severe cognitive impairment are under considerable strain. It
is primarily informal (unpaid) family caregivers who pro-
vide the assistance that enables the great majority of chronically disabled older
people to continue to live in the community rather than in specialized care facilities.
It has been estimated that the annual economic value of informal eldercare exceeds
national spending on formal (paid) care.50 Disabled older people at risk of nursing
home placement typically require at least 50 hours per week of personal assistance
with functional activities.51 Data are needed so that it will be possible to monitor
the amount and sources of informal caregiving.
Elder Abuse
In 1998, the Institute of Medicine at the National Academies reported a “paucity
of research” on elder abuse and neglect, with most prior studies lacking empirical
evidence.52 There are no reliable national estimates of elder abuse, nor are the
risk factors clearly understood. The need for a national study of elder abuse and
neglect is supported by the growing number of older people, increasing public awareness
of the problem, new legal requirements for reporting abuse, and advances in questionnaire
design.
Functional Limitations and Disability
Information on trends in functioning and disability is critical for monitoring the
health and well-being of the older population. However, the concept of disability
encompasses many different dimensions of health and functioning and complex interactions
with the environment. Furthermore, specific definitions of disability are
used by some government agencies to determine eligibility for benefits. As a result,
disability is often measured in different ways across surveys and censuses, and
this has led to disparate estimates of the prevalence of disability. To the extent
possible, population based surveys designed to broadly measure disability in the
older population should use a common conceptual framework. Federal agencies continue
to work together to find ways to compare existing measures of functioning and
disability across different surveys and to develop new ways to measure this complicated,
multi-dimensional concept. Longitudinal data that can be used to monitor changes
in patterns and in transitions in functional status are also needed.
Mental Health
Research that has helped differentiate mental disorders from “normal” aging has
been one of the more important achievements of recent decades in the field of geriatric
health. Depression, anxiety, schizophrenia, and alcohol and drug misuse and abuse,
if untreated, can be severely impairing, even fatal. There is also a need for more
data and better measurement of the incidence and prevalence of Alzheimer’s disease
and other causes of dementia. Despite interest and increased efforts to track all
of these disorders among older adults, obtaining national estimates has proven to
be difficult. Research is underway to address the challenges in developing
indicators of cognitive and mental health.
Pension Measures
As pension plans shift away from defined-benefit pensions and annuities to defined-contribution
plans, irregular payments will become more important to older people’s income.
In the future, improved data measuring withdrawals of money from these retirement
investment accounts (deferred earned income in IRAs and 401ks) will lead to improved
measurement of income and poverty for people age 65 and over.
Residential Care
A general shift in State Medicaid long-term care policy and independent growth in
private-pay residential care has led to an increasing set of alternatives to home
care and traditional skilled nursing facilities. Residential care outside of the
traditional nursing home is provided in diverse settings (e.g., assisted living
facilities, board and care homes, personal care homes, and continuing-care retirement
communities). A common characteristic is that these places provide both housing
and supportive services. Supportive services typically include protective
oversight and help with instrumental activities of daily living (IADLs) such as
transportation, meal preparation, and taking medications, and more basic activities
of daily living (ADLs) such as eating, dressing and bathing. Despite the growing
role of residential care, we have little national data on the number and characteristics
of facilities and the people living in these settings. Federal agencies associated
with the Federal Interagency Forum on Aging-Related Statistics are therefore working
together to design a new survey to obtain these estimates.