Access to Timely Formal care

Neurodegenerative diseases such as Alzheimer*s Disease and related disorders
constitute the most significant health, social and economic challenge of the
21st century. It is estimated that 9.9 million people in Europe have dementia
[1] accounting for over 28% of the total number of people with dementia
worldwide. The total cost of medical and social care for Alzheimer*s disease in
Europe is an estimated USD 135.04 billion [1]. Two thirds of people with
dementia (PwD) are living in the community, either alone or with a family
member. In the early stages, people can often continue to perform many tasks
independently. As the condition progresses, PwD will need increasing amounts of
care and support from sources such as family and social care services, as they
start to lose the ability to perform everyday tasks. Significant care and
support is provided by unpaid family carers; over 70% of PwD in Europe are
currently receiving unpaid care [2]. These informal carers are often partners
of advanced age who face health and social care challenges themselves. Informal
carers can experience high levels of stress, depression, social isolation and
physical health problems [3].
In recent decades, the European Parliament, together with national and
international organisations such as Alzheimer*s Disease International (ADI),
have adopted strategies to promote timely recognition of dementia [4]. An early
diagnosis is regarded as a prerequisite for improving dementia care, creating
an opportunity for all involved to proactively collaborate to make key
life-changing decisions regarding post-diagnostic care. Furthermore, early
diagnosis enables appropriate support services to be identified, and allows
health care professionals to plan and utilise resources, and avoid crises (for
example, as described in reports from ADI, NHS, Alzheimer Associations etc).
Timely access to these dementia care services is seen as crucial to reduce
health care costs by postponing nursing home placement, increasing quality of
life for patients, and reducing carer burden. Timely services are preferred to
early services in this context, with the emphasis on support being personally
tailored and so reducing the risk of overtreatment, under treatment and
maltreatment. Improved home care support will help to maintain independence and
dignity, enabling the PwD to stay at home longer with their families if the
right support is put in place that focuses on their needs. Most countries
acknowledge this is important and have policies to develop better home-based
and community services and aim to reduce institutionalisation [5].
Unfortunately, research has revealed that PwD and their carers are not
receiving the correct type of services or quality needed, and that they
experience much difficulty accessing and working with community care services,
even when having a diagnosis of dementia [6, 7]. This can put increasing
pressure on PwD and their carers which might lead to admission to a residential
home simply because the appropriate support is not in place [8]. Thus, despite
the favourable outcomes of timely access to formal care and the need for these
services to support informal carers, low rates of service use can still be
observed. Additionally, there is great diversity and inequity among different
health care and social care systems related to dementia between and within
individual European countries.
The right to health care is an essential element of the Universal
Declaration of Human Rights [9] and of the UN Convention on the Rights of
Persons with Disabilities [10]. It is widely acknowledged that social and
economic inequalities in access to health care should be eliminated to meet the
needs of older persons [11]. Therefore, there is a need for research based
studies to chart, analyse and evaluate the strengths and weaknesses of
individual pathways to care. The impact of dementia on the population of Europe
is of such a magnitude that this problem must be addressed collaboratively
across European countries.
The Andersen Behavioural Model of Use of Health Service [12-14] is a
theoretical framework which can be used to better understand access to and use
of services. The main assumption in this model is that certain factors
predispose a patient and their carer to service use (predisposing variables),
while other factors enable such use (enabling variables), and others determine
the need for care (need variables), which precedes service use. Predisposing
variables are intrapersonal factors such as demographics and attitudes.
Enabling variables are resources (such as access systems, waiting lists, health
insurance coverage and rurality) that support or impede service use. Need
variables are impairments of patients and caregivers that require services.
There is a complex relationship between needs and the demand for care and
service use in dementia due to needs changing constantly because of the
progressive nature of dementia and due to the fact that individuals are able to
adapt to their situation [15]. The Anderson model will be used to assess the
potential equality of access to and utilisation of services in Europe, by
identifying associations between service use and a broad spectrum of
predisposing and enabling variables, while controlling for need. To date it is
not clear to what extent the equality of service access and delivery influences
the quality of life of patients and their carers, and whether this differs
between countries. This type of information is very important for our
understanding of existing social and health care systems and will provide the
basis for subsequent initiatives.

The proposed project ACTIFCare (ACcess to TImely Formal Care) aims to increase
our understanding of why PwD and their caregivers use, or fail to use formal
care services. In our study, formal care includes home nursing care, day care
services and community or long-term medical, nursing, and social care
structures and processes, and excludes domestic home help, housekeepers,
volunteers, support groups, transport services, and meal programmes. A European
cohort study will assess the access to formal care in relation to met and unmet
needs and quality of life in community dwelling PwD and their carers and will
gather clinical data of dementia patients and their carers. Cost data are a
necessary prerequisite for political and stakeholder decisions, and will be
collected alongside the clinical assessments in order to generate an empirical
basis for the identification of best practices. The potential equality of
access to and delivery of services will be assessed by analysing associations
between service use and predisposing and enabling variables, while controlling
for need in accordance with the Andersen Behavioural Model of Health Service
Use. The results of the project will greatly help to define best-practice
strategies for access to formal care in dementia across Europe, enabling PwD
and their caregivers to receive the right amount and intensity of formal care
when and where needed, and to increase their quality of life.
The current proposal is innovative as it explicitly focuses on the
middle stage of dementia, which until now has not received proper attention, in
contrast with early stages of dementia or later stages of institutionalisation.
We will build on a FP7 project called Right Time Place Care (RTPC) but with a
different focus, going deeper into aspects that were only touched on by the
RTPC. In RTPC, establishing a case manager throughout the trajectory was
regarded as a sign of best-practice and tailor-made care indicated compliance
with the concept of person-centered care. This will be explored in more depth
in the qualitative semi- structured interviews in Work Package 3 (described
below). The use of combined methodology using both qualitative and quantitative
outcomes will yield a far broader insight into the reasons why PwD and their
carers use, or do not use, available services, and these outcomes will be
essential for a better alignment with patients* needs. A timely arrangement of
formal care services i.e. a personalised optimal timing (not too soon, not too
late) at which the transition from informal care to formal care takes place may
offer significant benefits in the future that relate to the quality of life of
PwD and their carers. Timely service utilization might have important
implications such as delaying institutionalisation [22]. Knowledge about
enabling and predisposing factors regarding access to care services can advance
the state of the art in health systems research into pathways to dementia care,
in order to benefit PwD and their informal carers.
Additionally this project will provide the opportunity to validate two
novel patient and carer related outcome measures on Quality of Life aspects,
the ICE-CAP-O and the CarerQoL, which have been designed already, but are not
available yet on the EU level.

Overall aims
The aims of the ACTIFCare project are:
1) To better understand access pathways to formal care for PwD living in the
community across Europe.
2) To identify factors that determine the appropriateness of timely access to
formal community services at macro and individual levels.
3) To analyse costs and consequences of access pathways to formal home care.
4) To evaluate the utility of two recently developed patient and carer outcome
measures in support of this (i.e. the ICECAP-O and CarerQol).
5) To develop and promote best-practice strategies.

Overall methodology
To achieve the above aims, the work plan consists of six work packages (WPs).
Work package 1 comprises the overall project management. WP2 involves a review
of access pathways to formal home care, based on literature review, expert
consultation, and focus groups. In WP3 a European cohort study will be
performed to examine the predisposing and enabling factors in relation to
access to formal care, needs and quality of life in community dwelling dementia
patients and their carers. A cost*consequences analysis, based on the clinical
and economic data assessed in the cohort study, will be performed in WP4. WP5
focuses on the identification of good-practice pathways to access formal care
and the development of best-practice strategies, in terms of costs and
consequences. WP6 concerns the public awareness of the project, dissemination
of the results to relevant stakeholders, including national political decision
makers, and providing implementation support, dissemination of best-practice
strategies, and initialisation of a platform for research and advocacy
regarding economic evaluations of dementia care across Europe.

The following protocol aims to provide a detailed description of the
qualitative and quantitative work involved for package 2 (access to timely
formal care in Europe), package 3 (the European cohort study) and package 4
(economic aspects).

Work Package 3: Development, implementation and analysis of a cohort study on
factors associated with the (non) utilisation of formal care services in
Europe.Research Objectives
1) Exploring the predisposing and enabling factors that are associated with the
use of formal care services.
2) Exploring the association between the use of formal care, needs and quality
of life in PwD and their informal carers.
3) Comparing these across participating EU countries.

Method
All 8 partner countries (Germany, Ireland, the Netherlands, Norway, Sweden,
United Kingdom, Italy and Portugal) will be included in the cohort study to
maximise variety and contrast e.g. between northern and southern European
countries. The cohort study will be a one-year, international, prospective,
observational study.

Work Package 4: Economic aspects
Research objectives
1. Understanding the costs and consequences of formal care services utilisation
in people with unmet needs in Europe.
2. Determining the major costs and quality of life drivers and the relation
with formal care services across European countries.
3. Validation of the ICECAP-O instrument and the CarerQol instrument for the
assessment of quality of life in relation to the timing of formal care in
Europe.

Research methods
Costs and effects will be examined based on the principle of cost-consequence
analysis. This type of analysis lists all relevant costs and consequences in
order to capture as much information as is feasible, in order to allow decision
makers to choose the outcome of interest for inclusion in economic analyses
[3]. Data on several HTA measures will be gathered in the cohort study of Work
Package 3 in all participants (N=50 in all 8 countries). A detailed description
of the sample, recruitment, design and measures is described in the work
package 3 chapters of this protocol.

Since no intervention is applied in this study, the risk for patients and their
carers is expected to be nil. Patients and informal caregivers participating in
the cohort study may however experience some burden due to the time investment
of the applied questionnaires and clinical tests. In addition, the
questionnaires and tests may be confronting resulting in emotional strain. The
direct benefit for patients and carers participating in the cohort study is
increasing awareness of formal care services in dementia and own care needs.
However, the project will mainly benefit society, as the best-practice
recommendations will be implemented in national and European guidelines and
laws. In addition, there are indirect benefits to society in terms of
contribution to significant knowledge on access to formal home care in Europe.