REPORTS ON THE DEMENTIA CARE LANDSCAPE

REPORTS ON THE DEMENTIA CARE LANDSCAPE

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TABLE OF CONTENTS

02.01. Health system organisation

02.01.01. The public health system

02.01.02. The private health sector

02.01.03. Access

– – 02.01.03.01. How are health services accessed?
– – 02.01.03.02. Does primary care access act as a gatekeeper system for access to secondary and tertiary care?
– – 02.01.03.03. Is access to health services universal? What are the potential barriers? Are there specific geographical areas or population groups for which access to health care is problematic?

02.02. Health system financing

02.02.01. How is the health system financed?

02.02.02. Coverage

– – 02.02.02.01. What proportion of the population is not covered by health insurance (private or public)?

02.02.03. Out-of-pocket expenditure

– – 02.02.03.01. Is there any data on the proportion of the population that incurs out-of-pocket expenditure?

02.02.04. Public funding

– – 02.02.04.01. Are there any planned changes to the financing strategies or financing mechanisms to fund the health system?
– – 02.02.04.02. Who is responsible for deciding how much funding is available for health care?
– – 02.02.04.03. What is the process for deciding how much funding is available for health service provision?
– – 02.02.04.04. Who sets the priorities for funding?

02.02.05. Budget allocation

– – 02.02.05.01. How are health budgets allocated and dispersed, across levels of the health system? Do health budgets get dispersed through geographical areas?
– – 02.02.05.02. How are health budgets allocated and dispersed, across program areas?

02.02.06. Private health care insurance

– – 02.02.06.01. What proportion of the population purchases private health care insurance?
– – 02.02.06.02. Are private health insurance markets regulated?

02.02.07. Out-of-pocket expenses

– – 02.02.07.01. What proportion of the population incurs out-of-pocket expenses to access health services?

02.02.08. Remittances

– – 02.02.08.01. Do remittances play an important role in the financing of health care?

02.02.09. International donations

– – 02.02.09.01. Does the country receive a significant amount of donations from other countries or individuals located outside of the country to support healthcare system?

03.01. Long-term care system organisation

03.01.02. Coverage and access

– – 03.01.02.01. Does the country have a public long-term care system? If so, please provide a description of its coverage: is it universal, or residual? What are potential barriers to access?

03.01.03. Public long-term care system

03.01.04. Private long-term care sector

03.01.05. Voluntary long-term care sector

03.02. Long-term care system financing

03.02.01. If the country has a public long-term care system, please answer:

– – 03.02.01.01. How is the public long-term care system financed?
– – 03.02.01.02. Who is responsible for deciding how much funding is available for long-term care?
– – 03.02.01.03. What is the process for deciding how much funding is available for long-term care service provision?
– – 03.02.01.04. Who sets the priorities for funding?
– – 03.02.01.05. How are long-term care budgets allocated and dispersed, across levels of the long- term care system? Do budgets get dispersed through geographical areas?
– – 03.02.01.06. How are long-term care budgets allocated and dispersed, across program areas?
– – 03.02.01.07. Are some aspects of long-term care covered by the country’s main health financing mechanisms (for example by the insurance schemes)?

03.02.02. Private insurance

– – 03.02.02.01. Are there private long-term care insurance products available? If so, what proportion of the population purchases them? Are private insurance markets regulated?

03.02.03. Out-of-pocket expenses

– – 03.02.03.01. Is there any data on the proportion of the population incurring in out-of-pocket expenditure when purchasing long-term care services?

03.02.04. Remittances

– – 03.02.04.01. Do remittances play an important role in the financing of long-term care?

03.02.05. Reforms

– – 03.02.05.01. Are there any planned changes (reforms) to the organisation and financing of the long-term care system?

03.03. Long-term care workforce (including unpaid/informal workers)

03.03.01. Size and structure of the workforce

03.03.02. Training and qualification

– – 03.03.02.01. Are there recognized professional training and qualification systems for the long-term care workforce?

03.03.03. Regulation

– – 03.03.03.01. Is there a regulatory body? Or do formal care workers belong to any professional body? Are there any guidelines published by any government agencies?

03.03.04. Trends

– – 03.03.04.01. Are there any patterns of staff vacancies (or with high turnover rate) that have been identified in the long-term care system?

03.03.05. Migration

– – 03.03.05.01. Does migration (within and between countries) play a role in the availability of long- term care workers? What are the migration patterns?

03.03.06. Conditions

– – 03.03.06.01. What is the organisation and working conditions of the long-term care workforce?

03.03.07. Volunteers

– – 03.03.07.01. Is there a clear role for volunteers within this workforce and how is this organised (shadowing paid staff, offered training etc.)?

04.01. Governance

04.01.01. Is dementia included within the portfolio of one or more ministries in the national government?

04.01.02. Which government sector is primarily responsible for Dementia?

04.01.03. In which branch is dementia primarily included: health, ageing, social services, mental health, NCDs?

04.01.04. Is there a dementia-specific representative within the national government?

04.02. Dementia policies and plans

04.02.01. Dementia-specific policies and plans

– – 04.02.01.01. Is there a dementia-specific national document (policy or plan) either in place or under development?
– – 04.02.01.02. When was this document updated?
– – 04.02.01.03. Have any resources been committed to its implementation?
– – 04.02.01.04. Are there any targets or milestones for monitoring implementation included? What do these encompass?
– – 04.02.01.05. What are the key goals/ aims of the dementia policy/plan?
– – 04.02.01.06. How are people living with dementia and their care needs presented and represented in this context? Are families/carers involved in the development of the policies and plans?
– – 04.02.01.07. How are policies and plans operationalized? Do they include (in addition to specific targets, indicators and timelines):
– – – 04.02.01.07.01. Resources/budgets attached to specific targets/indicators?
– – – 04.02.01.07.02. Any consequences for implementing or not implementing?

04.02.02. Other policies and plans that include dementia

– – 04.02.02.01. Is dementia integrated into or covered by a different national plan (such as a mental health plan)?
– – 04.02.02.02. Please specify which area of dementia is covered
– – 04.02.02.03. Are there dementia-specific documents operationalized at subnational levels?
– – 04.02.02.04. How is dementia framed in this context?

04.03. Characteristics of policies and plans for dementia

04.03.01. Do the plans and/or policies outlined above include/follow/ensure they are in line with:

– – 04.03.01.01. Human rights-based approach
– – 04.03.01.02. Equity
– – 04.03.01.03. Empowerment
– – 04.03.01.04. Multisectoral collaboration
– – 04.03.01.05. Universal Health Coverage

04.03.02. (How) does the policy reflect aspects of the sustainable development goals?

04.03.03. (How) are people with dementia and their family (unpaid) carers recognised in the policy document?

04.03.04. (How) is the risk of mistreatment and abuse of people with dementia incorporated into the policy?

04.03.05. (How) does the policy encourage person-centred care?

– – 04.03.05.01. Are people with dementia supported in maintaining an active role in the community?
– – 04.03.05.02. Are people with dementia encouraged to/ supported in maintaining self- management where possible?
– – 04.03.05.03. Are the preferences of people with dementia encouraged to be considered in care practice and decision making?

04.03.06. (How) are aspects of care quality assurance incorporated into the policy document?

04.03.07. (How) are health and long-term care workforce represented in the policy document?

04.03.08. (Who) are the key actors described in the policy document? Are their roles defined?

04.03.09. (How) does the policy document support integrated care?

04.03.10. (How) does the policy outline the interface between other aspects of care (e.g., general health care for older adults, mental health care etc)?

04.03.11. Does the policy document recognise potential barriers to access, and does it suggest solutions to overcome them?

04.03.12. (How) does the policy incorporate equity? (e.g., in access to care (availability, provision, costs), workforce rights, carer rights & protection)

04.03.13. (How) does the policy incorporate aspects of prevention and risk reduction? (e.g., link to public health initiatives, community initiatives)

04.03.14. (How) does the policy address aspects of sustainability? (e.g., financing, political, and social commitment)

04.03.15. If there is a policy already, who were the stakeholders involved in developing the policy? What is their role in enacting their policy? How is this monitored?

04.03.16. How are targets/milestones monitored? Is there evidence of achievements?

04.03.17. Are there named (key) stakeholders in the policy document? If yes, who are they and what is their role?

04.03.18. What are the expectations of the different stakeholders who participated in developing this policy?

04.04. Areas for action included in policies and plans for dementia

04.04.01. Please describe the areas for action that are included in any policies or plans for dementia according to the following seven categories:

– – 04.04.01.01. Dementia awareness, stigma reduction and dementia-friendly communities
– – 04.04.01.02. Dementia prevention and risk reduction
– – 04.04.01.03. Timely dementia diagnosis, post-diagnostic supports and care
– – 04.04.01.04. Workforce training on dementia
– – 04.04.01.05. Support for dementia carers and families
– – 04.04.01.06. Improved monitoring or information systems for dementia
– – 04.04.01.07. Dementia research and innovation

04.05. Legislation

04.05.01. Is there dementia-specific legislation either at the national or sub-national level?

04.05.02. Are there provisions related to protecting the rights of people with dementia? Indicate if they comply with international human rights standards according to the following criteria:

– – 04.05.02.01. Provisions exist which promote supported decision-making, which enable people with and without dementia or network of persons to discuss issues and make decisions
– – 04.05.02.02. Provisions exist which enable people with dementia (or all persons) to protect their rights and to file appeals and complaints to an independent legal body
– – 04.05.02.03. Provisions exist which promote the transition of dementia care to community-based services
– – 04.05.02.04. Provisions exist which provide for regular inspections of human rights conditions and/or care quality by an independent body in facilities where people with dementia reside
– – 04.05.02.05. Provisions exist which aim to end coercive practices, including seclusion and mechanical/physical/chemical restraints for people with dementia (or all persons)

04.05.03. Is there specific legislation pertaining to the following:

– – 04.05.03.01. Advance care directives
– – 04.05.03.02. Provisions which aim to end discrimination against people with dementia
– – 04.05.03.03. Provisions which aim to end discrimination against family carers

04.05.04. Additional STRiDE questions

– – 04.05.04.01. Are there provisions to protect the rights of family and other unpaid carers?
– – 04.05.04.02. Does the legal system place the responsibility of older parents directly on their offspring (either in the law or specifically in various policies)?
– – 04.05.04.03. How is curatorship/power of attorney obtained? Is curatorship/power of attorney awarded on a temporary basis only?

04.06. Clinical guidelines, standards, and protocols for dementia

04.06.01. Are there standards, guidelines or protocols for dementia?

04.06.02. Are they national or subnational standards/guidelines/protocols?

04.06.03. Are they approved by government?

04.06.04. What areas are covered by standards, guidelines, and protocols?

– – 04.06.04.03. Management of dementia (including treatment, medication management, non-cognitive symptoms and comorbidities)
– – 04.06.04.05. Advance care directives, power of attorney or guardianship
– – 04.06.04.06. Palliative and end-of-life care
– – 04.06.04.07. Care in nursing and residential care facilities
– – 04.06.04.08. Care in hospitals

04.06.05. Additional STRiDE questions

– – 04.06.05.01. Who developed the guidelines, and when were they developed?
– – 04.06.05.02. What are the expectations of different stakeholders in relation to the guidelines?
– – 04.06.05.03. Besides clinical standards or guidelines, is the use of traditional medicine and healers to manage or treat dementia common?
– – 04.06.05.04. If yes, what is commonly used?
– – 04.06.05.05. How are medicines or practices communicated and accessed?

04.07. Dementia care coordination

04.07.01. Is there a mechanism to coordinate care across sectors in government for people with dementia?

04.07.02. Which of the following sectors are included in the coordinated planning and resourcing of care for people with dementia across the continuum of care?

– – 04.07.02.01. Health
– – 04.07.02.02. Social
– – 04.07.02.09. Private sector

04.07.03. Is the coordinated planning and resourcing of care for people with dementia implemented at the national or sub-national level, or both?

04.07.04. Do formal agreements and/or joint plans exist across sectors in government for people with dementia?

04.07.05. What are the components of care coordination?

– – 04.07.05.01. Multi or interdisciplinary teams
– – 04.07.05.02. Task shifting/sharing
– – 04.07.05.03. Responsive referral protocols or pathways
– – 04.07.05.04. Continuity of information
– – 04.07.05.05. Provider continuity
– – 04.07.05.06. Community-based approach

04.07.06. Is care coordination between multiple governmental sectors occurring at primary, secondary, or tertiary level care?

04.07.07. Additional STRiDE questions

– – 04.07.07.01. How are the different aspects of care coordination organised? For example, if task sharing is being pursued, who trains whom, who supervises whom?

04.08. The policy process

04.08.01. What changes in policy in relation to dementia are expected in the next five years?

04.08.02. Is there evidence of ongoing developments that indicate a change in policy or financing for dementia in the future?

04.08.03. By whom and by what process are they driven by? What are the motivations?

04.08.04. Are the expected policy changes, likely to result in any of the following:

– – 04.08.04.01. A new or a revised National Dementia Plan?
– – 04.08.04.02. Dementia being included in another National Plan or policy, such as ageing, or NCDs?
– – 04.08.04.03. Are there any policy changes expected, perhaps in relation to long-term care or social protection, which may result in increased availability of care, treatment, and support?

04.08.05. Please provide your interpretation following the completion of previous parts of this desk review:

– – 04.08.05.01. Can new clinical guidelines covering dementia be expected?
– – 04.08.05.02. Who are the key stakeholders who can bring about a policy change in relation to dementia?

05.01. Was at least one functioning dementia public awareness campaign to improve understanding and reduce stigma and discrimination carried out during the past year?

05.02. Please describe all known public awareness campaigns for dementia and specify the name of the campaign, the delivery channel, the audience, the funding, and the area of implementation

05.03. What population groups outside the health and long-term care sector receive training and education in dementia?

05.03.01. Volunteers

05.04. Describe the cultural/societal perceptions of dementia

05.05. Is there any evidence of current or changing perceptions of dementia? If so, what is motivating these changes?

05.06. What factors predominantly affect perceptions about dementia?

05.07. What aspects does the training described under question 05.03. cover?

05.08. About public awareness campaigns and dementia, have these (or earlier) campaigns been evaluated? Is there evidence of impact?

05.08.01. Are there initiatives to improve the accessibility of the physical and social environment, including people with dementia? If so, which of these dimensions do they cover?

05.08.02. Accessibility of public spaces and buildings

05.08.03. Accessibility of public transportation vehicles

05.08.04. Assistance with home modification

05.08.05. Assistive technology to compensate for loss of capacity

05.08.06. Availability of community places where older people can meet

05.08.07. Availability of social opportunities as well as accessible information on leisure and social activities

06.01. Information systems for dementia

06.01.01. Is the number of people with dementia routinely monitored?

– – 06.01.01.01. By the Ministry/Department of Health?
– – 06.01.01.02. By the Ministry/Department of Social Development/other?
– – 06.01.01.03. By research-led institutions?
– – 06.01.01.04. By non-governmental organizations?

06.01.02. For each source, please describe what indicators are gathered, and what year the most recent estimates are available for

06.01.03. For each source, please outline what data sources are used to routinely monitor people living with dementia

06.01.04. For each source, please specify if the estimates are available electronically

06.01.05. For each source, please specify if the estimates can be disaggregated by gender, geographical area or by type of dementia

06.02. Epidemiology of dementia

06.02.01. What is the estimated prevalence and incidence of dementia and the source of these estimates?

06.02.02. Please outline the total deaths and Years of Life Lost (YLL) due to dementia and the source of these estimates

06.02.03. Please outline the total Years lived with disability (YLDs) due to dementia and the source of these estimates

06.02.04. Is the prevalence of dementia more pronounced in any specific geographical areas?

06.02.05. What is the average age of onset?

06.02.06. What is the average number of years people live with dementia?

06.02.07. Is there evidence for difference in incidence/prevalence by gender and for different ethnic groups?

06.02.08. What is the average number of years lived by people who have with dementia?

06.02.09. Are there relevant sub-groups of specific dementias? What is their prevalence/incidence?

06.02.10. Is there evidence of associations between dementia and poverty?

06.02.11. Is there a campaign to reduce the risk of dementia?

06.02.12. What risk factors have been associated with dementia?

06.02.13. Dementia is associated with a number of preventable risk factors. Can you provide information on:

– – 06.02.13.01. The proportion of people with primary education?
– – 06.02.13.02. The proportion of people with secondary education?
– – 06.02.13.03. The proportion of the population living with high blood pressure (hypertension)?
– – 06.02.13.04. The proportion of the population considered to be obese?
– – 06.02.13.05. The proportion of the population experiencing hearing loss?
– – 06.02.13.06. The proportion of the population that smokes?
– – 06.02.13.07. The proportion of the population living with depression?
– – 06.02.13.08. The proportion of the population that is physically inactive?
– – 06.02.13.09. The proportion of the population living with diabetes?
– – 06.02.13.10. Amount of alcohol consumed per capita (15+)
– – 06.02.13.11. The proportion of the population with high cholesterol

07.01. Overview of the dementia care system

07.01.01. Where and how do people get a diagnostic assessment for dementia?

07.01.02. What is the percentage of people with dementia that have received a diagnostic assessment?

07.01.03. Please provide the number of people who received a diagnostic assessment in the most recent year for which data are available

07.01.04. Are there differences in diagnostic assessment according to geographical areas (rural/urban) and also according to other socio-economic factors?

07.01.05. Which health or long-term care providers are responsible for coordinating the care of people with dementia?

07.01.06. Are there dedicated services supporting people with dementia after a diagnostic of dementia?

07.01.07. What are the links between primary care services, specialist care services and community/institutional care services supporting people with dementia?

– – 07.01.07.01. How are these links initiated/maintained?
– – 07.01.07.02. Are there protocols/bills (laws)/policies that outline who carries responsibility or is this depending on local practice/individuals?

07.01.08. Do people with dementia experience out-of-pocket expense to access diagnosis or care?

07.01.09. How do people with dementia access long-term care?

07.01.10. What is the estimated cost of dementia?

07.02. Dementia care system organisation

07.02.01. Community-based services for dementia

– – 07.02.01.01 Does the country provide health and long-term care services to support people with dementia in community-based settings?
– – 07.02.01.02. Does the country have any of the following:
– – – 07.02.01.02.01. Diagnostic services (in primary care)
– – – 07.02.01.02.02. Assessment and management of behavioural and psychological symptoms of dementia
– – – 07.02.01.02.03. Psychosocial services and rehabilitation
– – – 07.02.01.02.04. Activities of daily living support services
– – – 07.02.01.02.05. Palliative and end-of-life care services
– – – 07.02.01.02.06. Social and financial protection and benefit
– – 07.02.01.03. Are these community-based services available in certain areas only?
– – 07.02.01.04. Are these services provided by the public sector, the private sector or both?
– – 07.02.01.05. If available, the number of people who received community-based care (most recent estimate)
– – 07.02.01.06. Is there a mechanism to co-ordinate care, treatment, and support for people with dementia such as a care manager or dementia advisor, across health and long-term care?
– – 07.02.01.07. Are family and other unpaid carers recognised/registered as part of dementia diagnostic services?
– – 07.02.01.08. About the assessment and management of behavioural and psychological symptoms, what kind of interventions are available to people with dementia or their informal carers?
– – 07.02.01.09. Are there any other social interventions available for people with dementia in community-based settings? What kind of interventions are available?
– – 07.02.01.10. In regard of the provision of community-based services, what is the information on potential regional diversity?
– – 07.02.01.11. Are home care services available? Are there differences in availability by location? What kind of services are provided in people’s homes?
– – 07.02.01.12. Is access to care restricted through eligibility criteria? What are these criteria?

07.02.02. Non-governmental organisations (NGOs)

– – 07.02.02.01. Is there at least one national nongovernmental dementia association such as an Alzheimer Association/Society?
– – 07.02.02.02. If so, please indicate if they have (1) a national office; (2) sub-national offices or (3) both
– – 07.02.02.03. Are the majority of staff (>50%) volunteers or salaried?
– – 07.02.02.04. What dementia-specific activities and/or services does the association provide?
– – 07.02.02.05. Are any of their activities funded by the government?
– – 07.02.02.06. Has the association been involved in any policy development related to dementia?
– – 07.02.02.07. Where are services provided by NGOs available? Please describe the variability in availability and accessibility
– – 07.02.02.08. Are there any costs associated with accessing services provided by NGOs for people living with dementia and their carers/families?
– – 07.02.02.09. How many people with dementia and their carers are served by NGOs?

07.04. Health and long-term care facilities

07.04.01. Are the following types of health and long-term care facilities available?

– – 07.04.01.01. Residential long-term care facilities
– – 07.04.01.02. Hospice centres
– – 07.04.01.03. Adult day centres
– – 07.04.01.04. Outpatient (community) social centres

07.04.02. Please specify the total number of residential long-term care facilities and the total number of beds across all long-term residential facilities

07.04.03. How many people with dementia are living in residential long-term facilities (ideally for a one-year period)?

07.04.04. Do hospitals have any dementia-specific beds?

07.04.05. Do hospitals have any geriatric-specific beds?

07.04.06. Do hospitals track dementia-related admissions?

07.04.07. Of the different types of health and long-term care facilities listed above, where such facilities are available and how many such facilities are available?

07.04.08. What services are provided in (community) social centres?

07.04.09. Do these facilities offer dementia specific programmes/interventions? What kind of interventions are provided?

07.04.10. Question 07.04.02 investigated the number of residential long-term facilities. Do mental health hospitals/institutions play a role in the provision of residential dementia care?

07.05. Antidementia medication and care products

07.05.01. Are any antidementia medications approved by National Medicines Regulatory Authority?

07.05.02. Are any of these medications available as generics?

07.05.03. Are any of the following care products, equipment, and technologies available for free or partially subsidised for those with dementia?

– – 07.05.03.01. Adult hygiene products
– – 07.05.03.02. Assistive technology
– – 07.05.03.03. Housing adjustments

07.05.04. Are any of the medications previously mentioned available for free or partially subsidised?

07.05.05. Are non-pharmacological interventions, such as Cognitive Stimulation Therapy available for people with dementia? Are such interventions evidence based?

07.05.06. Does technology play a role in dementia care?

07.05.07. What are the costs of the main antidementia medications: donepezil, galantamine, rivastigmine and memantine?

08.01. Informal care workers

08.01.01. To what extent are informal care workers used to care for people with dementia

08.01.02. Please describe the employment conditions and any safeguarding concerns related to informal care workers for dementia

08.01.03. Please describe the socio-demographic characteristics of informal carers

08.01.04. Does migration (within and between countries) play a role in the availability of informal care workers? What are the migration patterns?

08.01.05. What information is available on the socio-economic status of informal care workers?

08.01.06. What is the average income of an informal care worker?

08.02. Family/unpaid care

08.02.01. What support is available for family/unpaid carers?

– – 08.02.01.01. Social protection
– – 08.02.01.02. Payments (cash transfers)
– – 08.02.01.03. Training and education
– – 08.02.01.04. Psychosocial support for carers
– – 08.02.01.05. Respite services for carers where they can take time away from their caring role to engage in other activities of choice
– – 08.02.01.06. Information on legal rights

08.02.03. What are the social norms and traditions of family care? Are there gender roles associated with family care?

08.02.04. Please describe the documented impacts on the caregiver of provision of unpaid care to people with dementia

– – 08.02.04.01. Health impact
– – 08.02.04.02. Employment, education, and other impacts
– – 08.02.04.03. Impact on social protection

08.02.05. Does the country have any employment policies for unpaid/family carers?

08.02.06. About the health impact of unpaid carers, is there evidence for aspects of both physical and mental health?

08.02.07. About the support for family/unpaid carers, who are the key providers?

08.02.08. Does social media or other technologies play a role in caring for a person with dementia?