Research

The HA-ID consortium has undergone three distinct phases since it was first established. Phase 1 focused on the large HA-ID study in which health issues were identified. This study provided an extensive source of data, which was followed by several intervention studies in Phase 2. HA-ID is currently in Phase 3. Below, the context in which each new HA-ID phase has emerged is provided.

From HA-ID 1 to HA-ID 3:
A decade of synergy between research and practice

2008-2013
HA-ID 1

Documenting group-specific health issues in the elderly who have intellectual disabilities

Read moreSluit

Context

Today, people with intellectual disabilities live longer thanks to the improved support that has been offered. Up until now, knowledge about the health and support needs of this new target group (the elderly who have intellectual disabilities) has been inadequate. ZonMw promotes the collaboration and the acquisition of knowledge by means of providing a large funding round aimed at researching the health of people with intellectual disabilities. Academic Collaboration Centers assume a prominent role in this endeavor.

Goals

Three research topics in the field of healthy aging were investigated: Physical Activity & Fitness, Nutrition & Nutritional Status, and Depression & Anxiety.

The following subjects were researched:

  • Identifying prevalences, high-risk groups, and health effects within each research topic and identifying the interconnections between the topics.
  • Examining the acceptance, implementation, and health effects of a day-activity program aimed at promoting exercise and physical fitness.
  • Understanding the distribution and severity when applying measures used to gauge public health such as: vulnerability, healthy and unhealthy life years, multimorbidity and polypharmacy, and factors that have a conducive and protective influence.

Results

In this first phase, the HA-ID studies were co-funded from ZonMw’s People with Intellectual Disabilities Program (Project no. 57000003) and the National Care for the Elderly Program (Project no. 314030302).

1.1 Epidemiological research on three themes

The health of a group of 1,050 people aged over 50 was examined in the widest sense. This study revealed group-specific health issues. Lifestyle, vulnerability, cardiovascular health, and mental health were not only problems that were encountered with increasing frequency, and at a younger age, but the group also had group-specific causes: reduced muscle mass, unbalanced circadian rhythm, an increased use in the medication taken, and a higher frequency of life events. See the full results presented in the HA-ID report here.

1.2 Follow-up study on vulnerability

The multidimensionality of many problems led to follow-up research on vulnerability in this target group. The degree of vulnerability of those over 50 years old was found to be similar to that of those aged over 75 in the general population, whereas the prevalence of chronic multimorbidity was similar to that of the Dutch population living in nursing homes. However, some of the health problems were different from those of the vulnerable or frail elderly in the general population. Because many of the factors that threaten health are present in the group aged between 50-59, younger age groups will be needed in the follow-up research on healthy aging. In addition to self-reliance, the care burden (and thus the healthcare costs) has been determined to a great extent by vulnerability, multimorbidity, and polypharmacy. See the articles under publications -> ‘subproject: vulnerability’.

1.3 Exercise more in daycare setting

The effects of an educational and exercise program for the elderly which aims at improving their health and physical fitness were studied. The study showed that the elderly can indeed improve their physical fitness and health by participating in a fun and feasible program. You can read more about this here. See the articles under publications -> ‘subproject: Exercise program HA-ID 1.

Follow-up steps

Individual report

Each participant and their family members received an individual report which showed the results of the health measures that had been taken. We recommended or initiated follow-up steps to improve the participants’ health. Dozens of medical, paramedical and behavioral health professionals enriched their expertise by employing new work methods and measurement tools and by taking part in the measurements and training sessions.

Nationwide system change

As a result of HA-ID 1, a nationwide system was implemented in which the support that had been offered by the AWBZ (Exceptional Medical Expenses Act) was primarily transferred to the Wmo (Social Support Act). This had far-reaching consequences for the field of healthcare. There was a need to substantiate the decision making regarding the type of support each group needed. The HA-ID results were used as means to justify the specialized support needed by those who had previously received a ZZP Indication (Care Intensity Package Indication) of 3 or 4, after the system change had been implemented as well. See the full report on ZZP Indication 3 via the link and here for ZZP Indication 4.

Exercise program

The HA-ID exercise program was developed into a fully downloadable program with support material in collaboration with Vilans and Kennisplein Gehandicaptensector (Knowledge Meeting Place for the Disability Sector). It has been made available free of charge at www.kennispleingehandicaptensector.nl/bewegen. Furthermore, dozens of international academic publications have been based on this research.

2014-2018
HA-ID 2

Studying specific interventions

for specific health issues in adults who have intellectual disabilities.
Read moreSluit

Context

The desire to professionalize healthcare and support has been a motivational factor in the need for high-quality research and knowledge. Additional knowledge, as well as the already existing programs for other target groups, are being used in an adapted form to address health issues with varying results.

The implemented system change is quite extensive and it has major consequences on the support to be provided, the funding, and the organization of care in the future. Care organizations and municipalities are acting together in restructuring what is frequently referred to as cross-group support. Independence, responsibility and expertise are key areas that are affected by the changing demands placed on professionals.

Goals

In HA-ID 2, it was decided to focus on a relevant and generally recognized health problem that had previously been observed in HA-ID 1: cardiovascular risk factors and the metabolic syndrome. This is not only a health problem that is widely supported and recognized in practice, it is also closely related to the vulnerability which has been identified in this target group. More importantly, there are group-specific causes and/or conditional aspects pertaining to interventions for which knowledge acquisition and advanced skills and expertise are needed. In addition, a number of smaller research and care improvement projects were initiated during this phase to address more directly several of the most important health issues by using the targeted implementation of diagnostics and treatment (in swallowing disorders, polypharmacy, and sleep problems and actigraphy). This also includes the research conducted regarding potential practical interventions (evaluating one’s walking gait and using light therapy to treat depression).

Results

2.1 Three care improvement projects

The three care improvement projects for swallowing disorders, polypharmacy, sleep problems and actigraphy were focused on the implementation of measurement tools and the working practice geared towards identifying and addressing health issues, such as those revealed in the first phase of HA-ID.

2.2 Research on gait abnormalities in relationship to falls

The research on gait abnormalities in relationship to falls (an important factor in frailty) shows that the gait pattern can be more variable. In addition, people with intellectual disabilities have more difficulty walking and talking at the same time.

2.3 Research on the effects of light therapy on depression

HA-ID showed that depression is five times more common in the elderly with intellectual disabilities than in the elderly without intellectual disabilities. In the general population, light therapy has been shown to be effective in treating both seasonal and non-seasonal depression. In this study, we are investigating whether this can also be effective in people with intellectual disabilities. This study is ongoing.

2.4 Research on the effects of light therapy on depression

HA-ID showed that depression is five times more common in the elderly with intellectual disabilities than in the elderly without intellectual disabilities. In the general population, light therapy has been shown to be effective in treating both seasonal and non-seasonal depression. In this study, we are investigating whether this can also be effective in people with intellectual disabilities. This study is ongoing.

2.5 Research on the feasibility of muscle mass training

Intensive strength training designed to build muscle mass can improve insulin sensitivity. However, several questions on feasibility still need to be answered before the effectiveness of this training can be determined. This study is ongoing.

Results

These three care improvement projects have ensured that the results obtained from research can be directly implemented and the working practices can be adjusted, including a ‘new’ set of measurement tools. In addition, the VB Fitscan was developed as a composite set of fitness tests based on the HA-ID 1 study. A manual including information on standards was developed, and a lively LinkedIn knowledge community was established consisting of more than 150 members. The group consists of mainly physiotherapists and movement experts who work with people with intellectual disabilities.

Research 2018-2022
HA-ID 3

Demonstrating group-specific support and treatment

by using and further enhancing evidence-based knowledge.
Read moreSluit

Context

There is a great need for longitudinal data pertaining to large groups of people with intellectual disabilities. Participatory research has taken flight and the motto is ‘Nothing about us, without us’. Wellbeing, independence, and self-management are the main goals, for which good health is a prerequisite. Many cross-group collaborations have now emerged in various municipalities. Behavioral problems seem to have received a greater focus in particular, but not exclusively, in the mild intellectual disability target groups and in the social domain. The following changes will include the transfer of outpatient treatment to the Healthcare Insurance Act. The recently implemented Care and Coercion Act regards behavior-influencing drugs, including antipsychotics, as falling under involuntary care calling for a reduction in medication. There is a need to further substantiate and emphasize the definition of specialist expertise and the need to work in a multidisciplinary manner so as to maintain and enhance the availabilty and quality of support and treatment for those with intellectual disabilities.

Goals

The group-specific health problems have been identified and a start has been made to find specific effective interventions to promote the health of people with intellectual disabilities. It has become more apparent that this focus should be continued by conducting further research on effective interventions. Moreover,  the results should be incorporated for instance in the social debate on specialist expertise, the withdrawal from antipsychotics, and the design of care packages. This phase has explicitly created a set of arrangements regarding the participation of people with intellectual disabilities when preparing, executing, and implementing research.

Research projects being prepared

3.1 Antipsychotics withdrawal

This major study will continue on into Phase 3. It will generate a great deal of knowledge on the effects of withdrawing from antipsychotics in regard to cardiovascular risk factors. Moreover, it will review  which specialist expertise and which multidisciplinary approach is required to reduce the use of antipsychotics successfully.

3.2 Effects of intensive muscle strength intervention

In this study, we measure the effects that intensive muscle strength training has on cardiovascular outcomes, on fitness, on independence in daily functioning, and on the quality of life. We have incorporated the recommendations from the feasibility study.

3.3 Follow-up of HA-ID 1 participants after a decade

Knowledge from longitudinal data can be used to prioritize policy and practice. What are the most promising topics to focus on in order to improve health, independence, and wellbeing in the long-term?

Read more about these studies under the heading ‘Research’.

Context

Today, people with intellectual disabilities live longer thanks to the improved support that has been offered. Up until now, knowledge about the health and support needs of this new target group (the elderly who have intellectual disabilities) has been inadequate. ZonMw promotes the collaboration and the acquisition of knowledge by means of providing a large funding round aimed at researching the health of people with intellectual disabilities. Academic Collaboration Centers assume a prominent role in this endeavor.

Goals

Three research topics in the field of healthy aging were investigated: Physical Activity & Fitness, Nutrition & Nutritional Status, and Depression & Anxiety.

The following subjects were researched:

  • Identifying prevalences, high-risk groups, and health effects within each research topic and identifying the interconnections between the topics.
  • Examining the acceptance, implementation, and health effects of a day-activity program aimed at promoting exercise and physical fitness.
  • Understanding the distribution and severity when applying measures used to gauge public health such as: vulnerability, healthy and unhealthy life years, multimorbidity and polypharmacy, and factors that have a conducive and protective influence.

Results

In this first phase, the HA-ID studies were co-funded from ZonMw’s People with Intellectual Disabilities Program (Project no. 57000003) and the National Care for the Elderly Program (Project no. 314030302).

1.1 Epidemiological research on three themes

The health of a group of 1,050 people aged over 50 was examined in the widest sense. This study revealed group-specific health issues. Lifestyle, vulnerability, cardiovascular health, and mental health were not only problems that were encountered with increasing frequency, and at a younger age, but the group also had group-specific causes: reduced muscle mass, unbalanced circadian rhythm, an increased use in the medication taken, and a higher frequency of life events. See the full results presented in the HA-ID report here.

1.2 Follow-up study on vulnerability

The multidimensionality of many problems led to follow-up research on vulnerability in this target group. The degree of vulnerability of those over 50 years old was found to be similar to that of those aged over 75 in the general population, whereas the prevalence of chronic multimorbidity was similar to that of the Dutch population living in nursing homes. However, some of the health problems were different from those of the vulnerable or frail elderly in the general population. Because many of the factors that threaten health are present in the group aged between 50-59, younger age groups will be needed in the follow-up research on healthy aging. In addition to self-reliance, the care burden (and thus the healthcare costs) has been determined to a great extent by vulnerability, multimorbidity, and polypharmacy. See the articles under publications -> ‘subproject: vulnerability’.

1.3 Exercise more in daycare setting

The effects of an educational and exercise program for the elderly which aims at improving their health and physical fitness were studied. The study showed that the elderly can indeed improve their physical fitness and health by participating in a fun and feasible program. You can read more about this here. See the articles under publications -> ‘subproject: Exercise program HA-ID 1.

Follow-up steps

Individual report

Each participant and their family members received an individual report which showed the results of the health measures that had been taken. We recommended or initiated follow-up steps to improve the participants’ health. Dozens of medical, paramedical and behavioral health professionals enriched their expertise by employing new work methods and measurement tools and by taking part in the measurements and training sessions.

Nationwide system change

As a result of HA-ID 1, a nationwide system was implemented in which the support that had been offered by the AWBZ (Exceptional Medical Expenses Act) was primarily transferred to the Wmo (Social Support Act). This had far-reaching consequences for the field of healthcare. There was a need to substantiate the decision making regarding the type of support each group needed. The HA-ID results were used as means to justify the specialized support needed by those who had previously received a ZZP Indication (Care Intensity Package Indication) of 3 or 4, after the system change had been implemented as well. See the full report on ZZP Indication 3 via the link and here for ZZP Indication 4.

Exercise program

The HA-ID exercise program was developed into a fully downloadable program with support material in collaboration with Vilans and Kennisplein Gehandicaptensector (Knowledge Meeting Place for the Disability Sector). It has been made available free of charge at www.kennispleingehandicaptensector.nl/bewegen. Furthermore, dozens of international academic publications have been based on this research.

Context

The desire to professionalize healthcare and support has been a motivational factor in the need for high-quality research and knowledge. Additional knowledge, as well as the already existing programs for other target groups, are being used in an adapted form to address health issues with varying results.

The implemented system change is quite extensive and it has major consequences on the support to be provided, the funding, and the organization of care in the future. Care organizations and municipalities are acting together in restructuring what is frequently referred to as cross-group support. Independence, responsibility and expertise are key areas that are affected by the changing demands placed on professionals.

Goals

In HA-ID 2, it was decided to focus on a relevant and generally recognized health problem that had previously been observed in HA-ID 1: cardiovascular risk factors and the metabolic syndrome. This is not only a health problem that is widely supported and recognized in practice, it is also closely related to the vulnerability which has been identified in this target group. More importantly, there are group-specific causes and/or conditional aspects pertaining to interventions for which knowledge acquisition and advanced skills and expertise are needed. In addition, a number of smaller research and care improvement projects were initiated during this phase to address more directly several of the most important health issues by using the targeted implementation of diagnostics and treatment (in swallowing disorders, polypharmacy, and sleep problems and actigraphy). This also includes the research conducted regarding potential practical interventions (evaluating one’s walking gait and using light therapy to treat depression).

Results

2.1 Three care improvement projects

The three care improvement projects for swallowing disorders, polypharmacy, sleep problems and actigraphy were focused on the implementation of measurement tools and the working practice geared towards identifying and addressing health issues, such as those revealed in the first phase of HA-ID.

2.2 Research on gait abnormalities in relationship to falls

The research on gait abnormalities in relationship to falls (an important factor in frailty) shows that the gait pattern can be more variable. In addition, people with intellectual disabilities have more difficulty walking and talking at the same time.

2.3 Research on the effects of light therapy on depression

HA-ID showed that depression is five times more common in the elderly with intellectual disabilities than in the elderly without intellectual disabilities. In the general population, light therapy has been shown to be effective in treating both seasonal and non-seasonal depression. In this study, we are investigating whether this can also be effective in people with intellectual disabilities. This study is ongoing.

2.4 Research on the effects of light therapy on depression

HA-ID showed that depression is five times more common in the elderly with intellectual disabilities than in the elderly without intellectual disabilities. In the general population, light therapy has been shown to be effective in treating both seasonal and non-seasonal depression. In this study, we are investigating whether this can also be effective in people with intellectual disabilities. This study is ongoing.

2.5 Research on the feasibility of muscle mass training

Intensive strength training designed to build muscle mass can improve insulin sensitivity. However, several questions on feasibility still need to be answered before the effectiveness of this training can be determined. This study is ongoing.

Results

These three care improvement projects have ensured that the results obtained from research can be directly implemented and the working practices can be adjusted, including a ‘new’ set of measurement tools. In addition, the VB Fitscan was developed as a composite set of fitness tests based on the HA-ID 1 study. A manual including information on standards was developed, and a lively LinkedIn knowledge community was established consisting of more than 150 members. The group consists of mainly physiotherapists and movement experts who work with people with intellectual disabilities.

Context

There is a great need for longitudinal data pertaining to large groups of people with intellectual disabilities. Participatory research has taken flight and the motto is ‘Nothing about us, without us’. Wellbeing, independence, and self-management are the main goals, for which good health is a prerequisite. Many cross-group collaborations have now emerged in various municipalities. Behavioral problems seem to have received a greater focus in particular, but not exclusively, in the mild intellectual disability target groups and in the social domain. The following changes will include the transfer of outpatient treatment to the Healthcare Insurance Act. The recently implemented Care and Coercion Act regards behavior-influencing drugs, including antipsychotics, as falling under involuntary care calling for a reduction in medication. There is a need to further substantiate and emphasize the definition of specialist expertise and the need to work in a multidisciplinary manner so as to maintain and enhance the availabilty and quality of support and treatment for those with intellectual disabilities.

Goals

The group-specific health problems have been identified and a start has been made to find specific effective interventions to promote the health of people with intellectual disabilities. It has become more apparent that this focus should be continued by conducting further research on effective interventions. Moreover,  the results should be incorporated for instance in the social debate on specialist expertise, the withdrawal from antipsychotics, and the design of care packages. This phase has explicitly created a set of arrangements regarding the participation of people with intellectual disabilities when preparing, executing, and implementing research.

Research projects being prepared

3.1 Antipsychotics withdrawal

This major study will continue on into Phase 3. It will generate a great deal of knowledge on the effects of withdrawing from antipsychotics in regard to cardiovascular risk factors. Moreover, it will review  which specialist expertise and which multidisciplinary approach is required to reduce the use of antipsychotics successfully.

3.2 Effects of intensive muscle strength intervention

In this study, we measure the effects that intensive muscle strength training has on cardiovascular outcomes, on fitness, on independence in daily functioning, and on the quality of life. We have incorporated the recommendations from the feasibility study.

3.3 Follow-up of HA-ID 1 participants after a decade

Knowledge from longitudinal data can be used to prioritize policy and practice. What are the most promising topics to focus on in order to improve health, independence, and wellbeing in the long-term?

Read more about these studies under the heading ‘Research’.

Current Studies

How do you age with intellectual disabilities in a healthy manner? That is the main question within the Academic Collaboration Center HA-ID. There are several lines of research that are interrelated within this consortium. HA-ID conducts research on both physical and mental health. There are three areas of focus within the current research program: withdrawal from antipsychotics, the impact of progressive resistance exercise training, and the health status of participants in the first HA-ID study. Read more on the various studies below.