Development Of Long-term Care Policy Research Articles

NGOS and stakeholder cooperation in long term care organizing and delivery: an equal player or an outlier?

This paper summarizes the arguments and counterarguments within the scientific discussion on the issue of inter-sectoral and inter-organizational cooperation in long-term care service policy-making, organizing and delivery with a specific focus on NGO role in it. The main purpose of the research is to explore the current situation, with a specific focus on NGO role in it, and look into some drivers of stakeholder cooperation in LTC organising and delivery and to compare them across public and private LTC providers and NGOs. Systematization of the literary sources and approaches indicates that NGOs’ role in stakeholder cooperation is unique due to the nature of their non-profit philosophy. The relevance of this scientific problem decision is that inter-organisational LTC cooperation with and by tertiary sector organisations has to date received very modest research attention, and is inconclusive and fragmented. This leads to not meeting growing needs for LTC services and increasing public costs. Investigation of the topic first offers empirical evidence on stakeholder cooperation in LTC policy development, organising and delivery across multiple stakeholder groups in three sectors – public, private and NGOs. In addition, it pays specific attention to NGOs role and engagement in LTC and identifies stronger and weaker areas of cooperation with other stakeholders. The paper also identifies several cooperation drivers and measures them in LTC field. The study builds on the findings of a survey of key LTC stakeholders in Lithuania (n=215). Results show that current NGO engagement in cooperation is lower in comparison to public and private LTC service providers and their cooperation is mainly limited to the sphere of LTC service delivery at an individual level, and family members, social workers and other NGOs make key stakeholder groups they cooperate with. The research empirically confirms that NGOs are outliers in cooperation in long-term care policy development, organising and delivery across multiple stakeholder groups. The results of the research can be useful for all the stakeholders in LTC policy field and service provision.

The Impact of COVID-19 on Nursing Homes in Italy: The Case of Lombardy

ABSTRACT Italy was the first western country strongly hit by the COVID-19 outbreak. This Perspective focuses on the large number of deaths that occurred in nursing homes during the first wave of the pandemic, and the weak capacity of public policy to provide them with adequate protection. The analysis focuses on the case of the Lombardy Region, where the mortality rate due to COVID-19 in nursing homes was the highest in Europe. In the search for possible causes, we investigate the situation of such facilities before the pandemic. Two aspects are analyzed: their institutional embeddedness and recent trends in their management. We conclude by arguing that the negative impact of COVID-19 stems from the poor development of long-term care policy and from the marginality of residential institutions within the healthcare system.

Stakeholder collaboration in long-term care of older people in Lithuania.

Demographic situation, changes in the role of women in society and growing demand for long-term care (LTC) of older people have challenged the ability to meet the growing LTC needs in most developed countries. In countries where responsibility for LTC is still largely laid on families, it is, however, even more critical and calls for improvements in formal LTC systems. More intensive stakeholder collaboration in LTC policy development, organising and delivery are of primary importance in improving LTC systems. Such collaboration, however, is not always successful; thus, it is critical to understand what makes it effective and efficient. In this paper, we specifically look into multistakeholder collaboration in LTC in Lithuania, one of the fastest ageing countries in the EU, with the demand for LTC services growing fast and exceeding the supply despite rising business and NGO engagement. To determine facilitators of such collaboration, we build on the data obtained through eight focus group discussions with all key stakeholder representatives (LTC policymakers, organisers and service providers [public, private and NGOs], 54 participants in total). Our findings indicate that in addition to national and organisational level facilitators studied in prior research, there are important individual level factors, such as meaningfulness at work, concern and care for others, possibility for personal growth and development, satisfaction with supervision, a sense of belonging and role clarity. On the other hand, our results show that collaboration is constrained by a shortage of human resources, increased workload caused by growing LTC demand, bureaucratic requirements, legal restrictions, lack of awareness of LTC service availability among elder persons, and prevailing social norms and attitudes to institutionalised care. Interestingly, a lack of financial resources is not perceived as a major constraint.

Improving Care for Older Adults in China: Development of Long-Term Care Policy and System.

This special issue covers several important topics related to long-term care (LTC) systems and policy development in China. It provides a good contextual background on the development of the LTC system in China as well as the needs and preferences of LTC from family and older adults' perspectives. In addition, this issue covers the topic of evaluation of a recently developed long-term care nursing insurance and provides an example of family caregiving for persons with dementia within the Chinese context. The authors in this special issue also provided insights into the impact of the COVID-19 pandemic on older adults' life and LTC quality, and explored potential strategies to handle the challenges during and post-pandemic.

LONG-TERM CARE NEEDS BY CHINESE ELDERLY AND POLICY PRIORITIES IN CHINA

With the life expectancy in China continuing to increase, age-dependent chronic diseases are also likely to increase, as is the number of people with long-term care needs. This study evaluated the Long Term Care (LTC) needs of the Chinese older population and introduced related policy priorities. Using the 2014 and 2016 “China Longitudinal Aging Social Survey”, this study assessed the physical functions of older adults by measuring their ability to perform Activities of Daily Living independently, compared changes within the two years, and explored other related indicators including, Instrumental Activities of Daily Living, major chronic disease, and mental health conditions. The study also discussed the development of long-term care policies in China and highlighted the priorities of these policies.

Reconceptualising co-residence in post-growth Japanese society

ABSTRACTThree-generation co-residence, derived from the pre-war family system, was a common living arrangement among Japanese families until the proportion of nuclear family households became dominant in the period of economic growth following the Second World War. Financial affluence among ageing parents due to pensions and personal savings, and changes in lifestyle and attitudes, stimulated the growth of elderly-only households from the 1970s. In contemporary Japanese society, patterns of co-residence are changing again. Growing numbers of ageing parents are living with their unmarried adult children, largely due to precarious employment and falling marriage rates among the younger generation. In response to ultra-low fertility, population ageing and low economic growth, current policy discourse and initiatives are encouraging co-residence. Using Census data and attitudinal surveys, this article examines changing post-war patterns of co-residence and conceptualises their shifting functions in post-growth Japan. While ‘de-familialisation’ underpinned the development of long-term care policy in the 1990s reducing the caring responsibilities of families by expanding services and provisions, current policy rhetoric and measures largely focus on ‘re-familialisation’. The article argues that policies encouraging a revival of co-residence through tax incentives and subsidies are, therefore, failing to address contemporary housing and fertility issues facing young adults.

Dementia in Latin America: Epidemiological Evidence and Implications for Public Policy.

Population aging is among the most important global transformations. Today, 12% of the world population is of age 60 and over and by the middle of this century this segment will represent 21.5%. The increase in population of those aged 80 and over, also referred to as the “oldest old” or the “very elderly”, will be even more pronounced, going from 1.7% of the population to 4.5% within the same period. Compared to European and North American countries, Latin America (LA) is experiencing this unprecedented demographic change at a significantly faster rate. Due to demographic and health transitions, the number of people with dementia will rise from 7.8 million in 2013 to over 27 million by 2050. Nowadays, the global prevalence of dementia in LA has reached 7.1%, with Alzheimer’s Disease (AD) being the most frequent type. This level is similar to those found in developed countries; however, the dementia rate is twice as high as that of the 65–69 years age group in developed countries. In addition, the prevalence and incidence of dementia is higher among illiterate people. Mortality rates due to dementia have risen considerably. The burden and costs of the disease are high and must be covered by patients’ families. The prevention of dementia and the development of long-term care policies and plans for people with dementia in LA, which take into account regional differences and similarities, should be urgent priorities.

The Development of Long-Term Care Policies and the Impact on Nursing

The government must reform and enhance current medical and long-term care services in order to respond effectively to societal ageing and labor shortage trends and to ensure sustainable operations. The post-acute care system should be reoriented on the home and community instead of the hospital. The Long Term Care Service Act integrates long-term care services that were previously dispersed amongst different departments, sets up a long-term care development fund, and improves the quality and allocation of long-term care services. Moreover, the Long Term Care Insurance Act will implement a bundle payment system to assist disabled families. The integration of automation and information technology will make long-term care more efficient. Although nurses are more skilled at elderly care and counseling than other community care professionals, nurses generally lack training in business management. Home and community-based services thus require better-trained manpower, opportunities to set care agents, and opportunities to offer flexible caring jobs. Therefore, nurses should strengthen their capabilities in post-acute care, business management, cooperation, and coordination.

Informal Long Term Care in China and Population Ageing: Evidence and Policy Implications

Long-term care (LTC) policy in China is in its infancy, and it is highly decentralised. Where policy structures exist, they are poorly resourced. Although China’s demography is still young by developed country standards, it is ageing very rapidly, and by mid-century will have “caught up” with many countries in the developed world with respect to population ageing. LTC policy development, therefore, is becoming a priority in China. We argue that it should be formulated with population ageing as a framework.

Identifying and Defining the Structures That Guide the Implementation of Participant Direction Programs and Support Program Participants

Participant direction (PD) programs offer the individual with a disability or his or her surrogate decision maker varying degrees of choice and control over the individual’s supports and services. We conducted a document analysis using grounded theory methods to identify the design elements of participant direction programs in long-term care. We analyzed 53 documents across multiple disabilities and funding sources. We identified and defined two major components of participant direction programs: policy and aid and assistance. The component of policy was represented by three structures that guide implementation of participant direction programs: (a) option to participant-direct, (b) participation stipulations, and (c) provider qualifications. The component of aid and assistance was represented by 11 structures that support program participants: (a) financial management services, (b) employer of record, (c) emergency back-up, (d) worker registry, (e) advice/counseling, (f) managerial assistance, (g) information dissemination products, (h) service quality monitoring, (i) service coordination, (j) participant training, and (k) provider training. Each structure was represented by one or more continua depicting the range of choice and control participants may have over the structure. The findings of this study have implications for improving the standardization of research on participant direction programs and the development of long-term care policy.

The Southern European migrant-based care model

ABSTRACTThe development of personal social services and female employment is intertwined, not only in the domain of childcare. With the ageing of the population, the changing forms of care and the developments in the eldercare labour market become crucial issues. The new risk of dependency represents a challenge, but also an opportunity. This paper provides an overview of the relationship between the development of long-term care policies and services in distinct European countries and female employment in the care sector. Whereas Northern European countries have developed policies in the field at an earlier stage and continental countries intervened with new policies in the last 10–15 years, in Southern Europe policies remain weak and fragmented. The paper concentrates on the case of Southern European countries, where the weakness of social policies and low development of services did not prevent the rise of a new care labour market. Next to still low employment rates among women, long-term care tends to be provided mainly by migrant care workers often in the underground economy regardless of their legal status. The last development is a key issue for Southern European countries, as discussed in the paper, not only for the current consequences on migrant workers, older people and their families, but also because it is likely to structure any possible future development in long-term care policies.

"The contribution of chronic diseases to the prevalence of dependence among older people in Latin America, China and India: a 10/66 Dementia Research Group population-based survey"

BackgroundThe number of older people is set to increase dramatically worldwide. Demographic changes are likely to result in the rise of age-related chronic diseases which largely contribute to years lived with a disability and future dependence. However dependence is much less studied although intrinsically linked to disability. We investigated the prevalence and correlates of dependence among older people from middle income countries.MethodsA one-phase cross-sectional survey was carried out at 11 sites in seven countries (urban sites in Cuba, Venezuela, and Dominican Republic, urban and rural sites in Peru, Mexico, China and India). All those aged 65 years and over living in geographically defined catchment areas were eligible. In all, 15,022 interviews were completed with an informant interview for each participant. The full 10/66 Dementia Research Group survey protocol was applied, including ascertainment of depression, dementia, physical impairments and self-reported diagnoses. Dependence was interviewer-rated based on a key informant's responses to a set of open-ended questions on the participant's needs for care. We estimated the prevalence of dependence and the independent contribution of underlying health conditions. Site-specific prevalence ratios were meta-analysed, and population attributable prevalence fractions (PAPF) calculated.ResultsThe prevalence of dependence increased with age at all sites, with a tendency for the prevalence to be lower in men than in women. Age-standardised prevalence was lower in all sites than in the USA. Other than in rural China, dementia made the largest independent contribution to dependence, with a median PAPF of 34% (range 23%-59%). Other substantial contributors were limb impairment (9%, 1%-46%), stroke (8%, 2%-17%), and depression (8%, 1%-27%).ConclusionThe demographic and health transitions will lead to large and rapid increases in the numbers of dependent older people particularly in middle income countries (MIC). The prevention and control of chronic neurological and neuropsychiatric diseases and the development of long-term care policies and plans should be urgent priorities.

When the Private Sphere Goes Public: Exploring the Issues Facing Family Caregiver Organizations in the Development of Long-Term Care Policies

SUMMARY Though family caregiving forms the backbone of the long-term care system in the United States, long-term care policies have traditionally focused on paid services that frail older people and people with disabilities utilize for their day-to-day functioning. Part of the exclusion of family caregiving from the long-term care discourse stems from the traditional separation of the private sphere, where family caregiving occurs, from the public sphere of policy making. However, the passage of the Family and Medical Leave Act (FMLA), the National Family Caregiver Support Program (NFCSP) and Medicaid waiver legislation may reflect recent changes in the government's position on their role in addressing issues related to the “private spheres.” In this article, we explore the nature of family caregiving in the United States, the divide between the public and private spheres and provide an overview of family caregiving-related policies and programs in the U.S. In our review, we examine the provisions in the FMLA, NFCSP, and Medicaid waiver legislation that support family caregiving efforts. We also examine the roles of family caregiver organizations in making family caregiving an important element of long-term care policy and influencing policy-making.

Programs and Prospects for Long-Term Care Policy for Older Americans: Are There Lessons for Korea?

This paper deals primarily with social policy considerations relevant to the development of long-term care policy for the frail elderly in the United States. However, it also includes some commentary on meeting the acute care needs of the frail elderly. It defines chronic care treatment as a mix of “short-term” and “long-term” modes of care. Furthermore, it explores the need for treatment of such long-term illnesses to recognize the importance of alternative modes of caring which include strategies, both medical and non-medical, delivered within and outside of hospitals and nursing homes. The paper includes an analysis of public and private sector priorities based in data published by the U.S. Centers for Medicare & Medicaid Services (formerly the U.S. Health Care Financing Administration). It also includes some discussion of the PACE Program in the United States and some other efforts to stimulate more in-home and community-based alternatives to nursing home care. Furthermore, it includes a discussion of the policy goal of “appropriateness” in developing long-term care (as well as general health priorities) and provides a critical discussion of problems with utilizing “cost benefit analysis.” The study concludes that too exclusive a focus on nursing home care for the elderly in the United States is unfortunate — both in terms of the desires of the elderly, their families and friends and in terms of focusing on “appropriateness” as a legitimate policy goal in the development of long-term care policy for the elderly in the United States.

Long-term care policy for older Americans: building a continuum of care.

This paper deals primarily with social policy considerations relevant to the development of long-term care policy for the frail elderly in the United States. However, it also includes some commentary on meeting the acute care needs of the frail elderly. It defines chronic care treatment as a mix of "short-term" and "long-term" modes of care. Furthermore, it explores the need for treatment of such long-term illnesses to recognize the importance of alternative modes of caring which include strategies, both medical and nonmedical, delivered within and outside of hospitals and nursing homes. The paper includes an analysis of public and private sector priorities based in data published by the U.S. Health Care Financing Administration. It also includes some discussion of the PACE program in the United States and some other efforts to stimulate more in-home and community-based alternatives to nursing home care. Furthermore, it includes a discussion of the policy goal of "appropriateness" in developing long-term care (as well as general health priorities) and provides a critical discussion of problems with utilizing "cost/benefit analysis." The study concludes that too exclusive a focus on nursing home care for the elderly in the United States is unfortunate-both in terms of the desires of the elderly, their families and friends and in terms of focusing on "appropriateness" as a legitimate policy goal in the development of long-term care policy for the elderly in the United States.

Ways of thinking about the long-term care of the baby-boom cohorts.

In examining various ways of thinking about the development of long-term care policy for the baby-boom cohorts, this article discusses the importance of basing long-term care policy discussions on a recognition of social and economic trends, as well as on the informal exchanges of care that occur over life and the diversity within the baby-boom cohorts. The implications of two ways of thinking about challenges posed by the aging of baby boomers--the generational equity/crisis perspective and the generational investment/gradual adjustment perspective are also discussed. It is suggested that the generational equity perspective is consonant with proposals to expand private savings for long-term care contingencies and private long-term insurance and, secondarily, with proposals to expand means-testing for benefits. The second perspective is more consistent with proposals to create new universal services through a traditional social insurance approach, or through a block grant such as the one discussed in the context of the Clinton health care reform plan.

Conceptual Framework for Development of Long-Term Care Policy 1. Constitutive Elements

RÉSUMÉLes éléments pour la conception d'un schéma conceptuel pour la planification des services de longue durée (SLD) sont élaborés en se fondant sur deux courants de pensée. L'un, plus pratique d'orientation, emprunte aux réflexions sur la démarche de planification, l'autre, théorique, est celui des théories sociologiques de l'action. La planification est définie comme une action qui vise le développement d'un plan, c'est-à-dire qu'à partir à la fois de valeurs et de désirs et de ressources et de contraintes, des objectifs opérationnels sont défïnis et des moyens sont choisis. La planification s'articule done autour de quatre thémes: (1) l'établissement d'un ordre de priorités, (2) la mise en place d'organisations sous la forme d'établissements, (3) le choix d'objectifs et (4) la détermination des ressources. Ces quatre thémes sont analysés tour à tour pour donner chacun quatre éléments qui définissent 16 thèmes, dilemmes, problèmes ou enjeux propres aux SLD. Les rapports entre ces éléments, normatifs par définition, formeront l'essentiel de notre proposition de modèle pour la planification des SLD.

Giving Consumers a Say in Policy Development: Influencing Policy or Just Being Heard?

This paper focuses on the trend to involve consumers in public policy-making and implementation. The development of long-term care policies for elderly people in Ontario is examined as an illustrative case to explore the purposes and accomplishments of such initiatives. Building upon analysis of policy documents, observation of a community consultation process and debates in the literature on consumer participation and on the politics of needs interpretation, it is suggested that government-initiated participatory strategies elicit only particular kinds of information from consumers and do not live up to their democratizing promise.

Comment on Donald L. Redfoot's “Long‐term care reform and the role of housing finance”

At this writing, the Clinton administration’s proposal for reforming the nation’s health care system has just been released. The proposal includes an optional state-federal program that provides some coverage for long-term care, including home and community-based care for disabled persons. But there is no mention of housing. This iteration in the development of longterm care policy is only the latest in a long history of academic studies of the long-term care system and congressional proposals to reform it. Housing has essentially always been excluded. One must recognize this history of neglect to fully appreciate the significance of Don Redfoot’s article, “Long-Term Care Reform and the Role of Housing Finance.” The article joins what is unfortunately only a handful of writings that have addressed the link between housing and broader social welfare issues—in this case, long-term care (e.g., Cohen 1969; Newman 1990; Newman and Schnare 1992; Noelker 1982; Sussman 1979). Redfoot’s effort and publication of his article in Housing Policy Debate certainly increase the odds that at least the housing sector may begin to pay serious attention to the need to conceptualize the role of housing in long-term care. For this alone, Don Redfoot and Fannie Mae deserve much credit. Redfoot reviews a litany of ills associated with the current system of long-term care and, particularly, nursing homes: high costs that have grown faster than the general inflation rate; inappropriate placement in nursing homes of many elderly who do not require the level or intensity of services provided; the requirement that elderly persons pauperize themselves to qualify for Medicaid coverage of nursing home costs; and discrimination against nursing home applicants whose disability levels generate unacceptable cost-reimbursement ratios. His preferred solution to these problems is universal coverage for long-term care services—a much more extensive program than the optional capped block grant for home and community-based