ASIA C.A.R.E.S. Consortium: Developing Caregiver Support for those Caring for an Elderly Family Member with Mental Health Issues

The global population is aging and greater numbers are developing and living with Alzheimer’s Disease and other dementia (Kaneda, 2006; ADI, 2015; WPA 2015; WHO, 2011, UN, 2015). This trend is also happening in Central Asia countries. An aging population combined with an increased number with Alzheimer’s and other dementia will put additional pressure on the health and social service systems, and on family caregivers. GLORI Foundation collaboratively with Counterpart Sheriktesh Public Association and other multiple partners work to implement interventions, programs, and policy strategies to meet and prepare for this demand is now. Our goal is to prepare for the aging population and increased numbers with Alzheimer’s Disease and other dementia, is to support family caregivers.

We would like to refer to the WHO guidelines and definitions while further describing dementia and related issues.

The majority of elderly in Central Asia are cared for at home by family member caregivers, most often women. This ASIA C.A.R.E.S. project focuses on the caregivers of the sub-set of elderly with Alzheimer’s Disease and other dementia. There is substantial research on caregivers including the negative impact on caregiver’s own physical and mental health. Increased stress, depression, lack of self-care, isolation and limited social support, and financial pressures, are all reported. The impact is not only on the caregiver and elderly under care, but the entire family unit. When the elder has Alzheimer’s Disease there are additional challenges for the caregiver including lack of information about the disease progression and strategies to manage the communication and behavior change. Stress is also identified as a risk factor for elder abuse (WHO, 2002) and caregiver interventions are recommended as prevention of elder abuse (Pillemer et al, 2016).

There is substantial evidence-based research focused on caregivers and successful intervention components. Outcomes for these studies include increased self-care, improved physical health, reduced levels of depression, reduced perception of situation burden, reduced stress symptoms, skill-building for caring for elderly, and improved social support.

A collaboration of partners in Kyrgyzstan including local and international NGOs, medical and mental health practitioners, is working to develop and pilot an evidence-based intervention for caregiver support. The ASIA C.A.R.E.S. – Caregiver education & training, Advocacy, Research, Elder mistreatment prevention, and Services development – addresses the multi-level issues involved in topic area of caregivers, elderly, and mental health. ASIA C.A.R.E.S. strategies proposed are focused on the individual level, community level, and society level.

A needs assessment was conducted to understand needs and constraints of caregivers for older people in Kyrgyzstan and more information about the elderly with Alzheimer’s Disease and other dementia. Before, this information was not known. The needs assessment also served to inform the development of the intervention. The intervention is supposed to be a unique in the design to address the specific context in Kyrgyzstan and will also incorporate the applicable evidence-based strategies and interventions. The intervention will be piloted and packaged for further dissemination. This is an innovative and novel program as currently there are no intervention programs for caregivers or for elderly with mental health issues in the Central Asia region.

Critical to the success of the project is the broad-based collaboration of partners committed to this project. A coalition of partners including GLORI Foundation, Counterpart Sheriktesh Public Association, Help Age International in Kyrgyzstan, Crisis Centers Association, the Kyrgyz Psychiatrist Association, the Kyrgyz Medical Academy Department of Psychiatry headed by Dr. Tatiana Galako, Psychology Department at the American University of Central Asia headed by Dr Elena Molchanova, and research centers in USA, Kazakhstan, Tajikistan and Uzbekistan, have joined forces for this initiative. As the President and founder of the Kyrgyz Forum of Women’s NGOs, Nurgul Djanaeva, recently mentioned, majority of the caregivers in Kyrgyzstan, i.e. potential project beneficiaries, are women. The coalition is a multidisciplinary Working Group to design and lead the ASIA C.A.R.E.S. project initiated by the GLORI Foundation and Counterpart Sheriktesh Public Association.

The ASIA C.A.R.E.S. project includes collaboration with international experts and researchers including graduate fellows of the Social Work Scholarship Program of the Open Society Foundations trained at Columbia University in the City of New York and Washington University in St Louis.

The ASIA C.A.R.E.S. strategic plan includes the following initiatives:

  • advancing collaboration with the Caravan Mate Team in Japan;
  • establishing a local branch of an Alzheimer’s association;
  • advocacy for policy changes;
  • promoting positive language when reporting on elderly’s Alzheimer’s Disease and mental illness through media training program; and
  • raising awareness on elder abuse.

These issues are emerging and are gaining increased attention in Central Asia. Currently the situation in Kyrgyzstan – for example, there is no single department in the existing mental health system focused solely on the needs of the elderly, and there are very limited residential nursing/group homes or day care programs for elderly – means that it will be caregivers’ themselves and hopefully a future association that will solidify their voices and advocate for improved change. The advocacy will also include enhancing the elderly’s access to medication and overall, will follow the framework of the Strategy of Health Development in Kyrgyz Republic through 2030 that prioritizes client-oriented approach and suggests steps for community involvement in developing the health services.

Questions & Answers as informed by the Rapid Situational Analysis applied by GLORI Foundation in March 2018:

What is the correlation between a caregivers' stress and a risk of domestic and family violence for the elderly people in their families in Kyrgyzstan?
Most elderly in Kyrgyzstan are cared for at home by family member caregivers. This project focuses on the caregivers of a sub-set of elderly, those with mental illness. Caregivers’ own physical and mental health is often negatively impacted with stressors associated with care giving. These stressors include lack of self-care, increased stress, lack of social support, financial burden, and competing priorities of caring for self, work, the elderly family member, and other family members. Additional stress occurs when the elderly family member has mental illness and brain disease, including Alzheimer’s. Limited information about the progressive brain disease combined with limited learned skills for communication and behavior change, further complicate the situation. Currently, there are no programs providing support for caregivers of this population in Kyrgyzstan and there is limited information about the mental health issues experienced by the elderly.
Globally there are rising number of those with Alzheimer's disease. What is the situation with older people and those with Alzheimer's disease in Kyrgyzstan?
When we conduct needs assessment we will have more information. HelpAge International and Counterpart Sheriktesh Public Association recently circulated a report on the number of elderly in Kyrgyzstan which said, as of 2015 there were more than 448,000 older people living in Kyrgyzstan (this is about 7% of the total population of the country). Additionally, future population projections indicate an aging population in Kyrgyzstan which includes both an increased number of elderly and a slowing growth of the younger population.

The situation of older people in Kyrgyzstan is characterized by three main factors: poor health, poverty, loneliness. One of the reasons for loneliness and isolation of lonely older people is a forced isolated life due to physical weakness. Almost a third of lonely people experience difficulties in solving the most common hygienic and household issues. Unfortunately, these people still remain unprotected in social terms, they need the support of their children, the State, and society. This is a socially vulnerable group that is the main target group for social services. At the same time, between 2015 and 2050, the number of older people living in high income countries is forecast to increase by 56%, compared with 138% in upper Middle Income countries, 185% in lower Middle Income countries, and by 239% low income countries. Rising life expectancy is contributing to rapid increases in numbers and is associated with increased prevalence of chronic diseases like dementia.

As for dementia, the global estimates report 46.8 million people worldwide living with dementia and this number will almost double every 20 years By 2030, the number living with dementia will reach 74.7 million in 2030, and 131.5 million in 2050. Of interest is that 58% of all people with dementia live in countries currently classified by the World Bank as Low or Middle Income countries. This proportion is estimated to increase to 63% in 2030 and 68% in 2050. Finally, the incidence of dementia increases exponentially with increasing age, doubling with every 6.3 year increase in age, from 3.9 per 1000 person-years at age 60-64, to 104.8 per 1000 person-years at age 90+.

Do you think that the project experience will be beneficial for and can be replicated in other countries of the former Soviet Union?
This project will develop an intervention for caregivers that will be piloted and assessed at baseline, immediate post, and 3-month follow-up points. The unique materials – including surveys, M&E forms, scripts and handouts – will be packaged as Intervention Manual and the Project Implementation Guide and available in Russian and English. Paper-based and digital versions uploaded to the web-based Resource Center will be available. The availability of intervention material will help to disseminate this innovative and novel program in other countries of the former Soviet Union and replicate it where currently there are no intervention programs for caregivers or for elderly with mental health issues.
What are the key project activities?
The project includes conducting a needs assessment, intervention development, and piloting of the intervention with 70 individual caregivers. It also includes the hiring of senior international and national consultants with expertise in gerontology, mental health, program development, and web design.
Is it a research or a practical service development project?
We see it as a service development project with science-based monitoring and evaluation framework informed by the implementation research guidelines.
What are the different types of interventions?
We would like to apply the multi-level approach, including at the individual level (family level), community level, and society level. At the individual and family level, interventions include focusing on stress management, social support, psycho-education, goal setting, and behavioral and communication skill-building. At a community level, training for professionals – including mental health workers, psychologists, police, religion community leaders – will create a more informed professional base about the needs of elders with dementia and their family caregivers. The training will also focus on increasing the awareness and identification of a range of elder abuse that includes not only physical violence but financial abuse, emotional abuse, verbal abuse, and neglect.
At a society level what might be done?
Work will focus on laws related to medications for Alzheimer’s and also a review of law related to elder care and elder abuse. Possibly public service announcements to expand the definition/understanding that neglect and verbal and financial abuse, are also considered elder abuse.
Will this program ultimately save health and social service costs?
An aging population and increased numbers with Alzheimer’s Disease and dementia will put additional services and resource pressure on the health and social service system. Reports also suggest that low resource countries will be especially impacted as the health and social service system are already financially and resource burden. Assisting caregivers is one strategy proposed to help the overall situation and that is where we are targeting with this first intervention. In addition, if the caregivers are supported they will be healthier (mentally and physically) and in need of less services themselves. It is a priority of the project to better understand the economic and system impact of the aging population (and with dementia) and the impacts of these interventions.
What are the references to the data that you are building this concept on?
Here are selected references, and per request the research articles supporting caregiver intervention outcomes can be provided:

    • Alzheimer’s Disease International (2015). World Alzheimer’s Report.
    • Kaneda, T. (2006). A Critical Window for Policymaking on Population Aging in Developing Countries. Population Reference Bureau.
    • Pillemer, K., Burnes, D. Riffin, C., Lachs MS. (2016). Elder Abuse: Global Situation, Risk Factors, and Prevention Strategies. Gerontologist. Apr, 56(Suppl2): S194-S205. PMCID: PMC5291158 Published online 2016 Mar 18.
    • United Nations (2015), Department of Economics and Social Affairs, World Population Aging report.
    • World Health Organization (2011). Global Health and Aging.
    • World Health Organization (2002). World Report on Violence and Health. Edited by Etinne G. Krug, Linda L. Dahlberg, James A. Mercy, Anthony B. Zwi, Rafael Lozano. Chapter 5, Abuse of the Elderly.

Comments are closed.