Welcome to my world:Support needs of ageing people with intellectual disabilities

Mensen met een verstandelijke beperking worden steeds ouder door verbeterde levensomstandigheden en betere medische zorg. Dit komt overeen met de toenemende vergrijzing in de algemene bevolking. Hoewel de levensverwachting van zowel mensen met als zonder verstandelijke beperking toeneemt, verschilt het verouderingsproces van mensen met een verstandelijke beperking van dat van ouderen in de algemene bevolking. Het verouderingsproces van mensen met een verstandelijke beperking begint vaak al eerder: vanaf het 50e levensjaar worden mensen met een verstandelijke beperking al tot ‘de ouderen’ gerekend. Ouderen met een verstandelijke beperking hebben daarnaast een verhoogd risico op het ontwikkelen van gezondheidsproblemen, zoals diabetes, depressie, obesitas, visuele beperkingen, slikproblemen, angststoornissen en dementie. De toename in levensverwachting en het mogelijk complexe verouderingsproces van mensen met een verstandelijke beperking heeft geleid tot veranderingen in ondersteuningsbehoeften en tot nieuwe uitdagingen voor zorgprofessionals in de dagelijkse zorg en ondersteuning. Desondanks is er nog weinig onderzoek gedaan naar de ondersteuningsbehoeften of het perspectief van ouderen met een verstandelijke beperking, en daarbij passende ondersteuningsbenaderingen. Het promotieonderzoek bestaat uit drie onderdelen. Hieronder een omschrijving van elk onderdeel, inclusief de resultaten: 1. In het eerste deel zijn de belangrijkste ondersteuningsbehoeften van ouderen met een verstandelijke beperking op de verschillende domeinen van kwaliteit van leven onderzocht. Hiervoor werden psychologen met expertise op het gebied van ouderen met een verstandelijke beperking geïnterviewd. Daarnaast werden gesprekken gevoerd met ouderen met verstandelijke beperking over wat zij het belangrijkst vinden in hun dagelijks leven en welke ondersteuningsbehoeften zij ervaren. De resultaten laten zien dat ouderen met een verstandelijke beperking, naast ondersteuning op het vlak van lichamelijk welbevinden, vooral ondersteuning nodig hebben op het gebied van emotioneel en existentieel welbevinden, zelfbepaling en persoonlijke relaties.2. Het tweede deel van het promotieonderzoek had als doel een overzicht te geven van bestaande psychosociale interventies voor ouderen met een verstandelijke beperking, via een systematische review. Uit de review blijkt dat er weinig psychosociale interventies voor ouderen met een verstandelijke beperking beschikbaar of ontwikkeld zijn, die zorgprofessionals direct kunnen toepassen in de dagelijkse zorg. Dit betekent dat zij weinig keuze of mogelijkheden hebben om psychosociale interventies in te zetten bij ouderen met een verstandelijke beperking.3. Het laatste deel van het promotieonderzoek richtte zich op het inzichtelijk beschrijven van de onderdelen van Belevingsgerichte zorg (BGZ) - een vorm van persoonsgerichte zorg - voor ouderen met een verstandelijke beperking, gebaseerd op drie verschillende kennisbronnen: wetenschappelijke kennis, professionele kennis en ervaringskennis. Doel van dit kwalitatieve onderzoek was het identificeren van de belangrijkste onderdelen van BGZ en deze zo te beschrijven dat het begrijpelijk is wat BGZ voor ouderen met een verstandelijke beperking is en hoe dit als zorgprofessional in de dagelijkse praktijk toe te passen. Uit dit deelonderzoek blijkt dat BGZ een veelbelovende ondersteuningsstrategie voor zorgprofessionals kan zijn en dat het - naast de aandacht voor de medische en fysieke aspecten van de zorg voor ouderen met een verstandelijke beperking - hun aandacht helpt te vergroten voor de psychosociale aspecten van het verouderingsproces bij het verlenen van dagelijkse zorg aan ouderen met een verstandelijke beperking.-People with intellectual disabilities are living longer due to improved living conditions and better medical care, similar to the dynamics of ageing in the general population. Although both groups’ life expectancies are increasing, the ageing process of older people with intellectual disabilities is different from older people in the general population. The ageing process of people with intellectual disabilities often starts earlier: people with intellectual disabilities are already considered 'the elderly' from the age of 50. Older people with intellectual disabilities also have an increased risk of developing health problems, such as diabetes, depression, obesity, visual impairment, dysphagia, anxiety disorders and dementia. The increase in life expectancy and the potentially complex ageing process of people with intellectual disabilities has led to changes in support needs and new challenges for support staff in day-to-day care and support. Yet, little research has been done on the support needs or the perspectives of older people with intellectual disabilities, and appropriate support strategies/care approaches.The present thesis consists of three parts. Below is a description of each part, including the results: 1. In the first part of this thesis, the main support needs of older people with intellectual disabilities across the quality-of-life domains were examined. For this purpose, psychologists with expertise on older people with intellectual disabilities were interviewed. In addition, interviews were also conducted with older people with intellectual disabilities about what they consider to be most important in their daily lives and what support needs they experience. The results show that, besides support needs in the domain of physical well-being, older people with intellectual disabilities mainly experience support needs in the domains of emotional and existential well-being, self-determination and personal relationships.2. The second part of this thesis aimed to provide an overview of existing psychosocial interventions for older people with intellectual disabilities, by conducting a systematic review. The review showed that relatively few psychosocial interventions for older people with intellectual disabilities are available for support staff members to apply directly in their daily work. This implies they have little choice or opportunity to work with psychosocial interventions for older people with intellectual disabilities.3. The final part of this thesis focused on understanding and describing the intervention components of Integrated Emotion-Oriented Care (IEOC) - a form of person-centred care - for older people with intellectual disabilities, based on three different sources of knowledge: scientific knowledge, professional knowledge and experiential knowledge. The aim of this qualitative study was to identify the main components of IEOC and provide a better understanding of what IEOC for older people with intellectual disabilities is and how to apply it as a support staff member in daily practice. This study shows that IEOC can be a promising support strategy for healthcare professionals and that - in addition to focusing on the medical and physical aspects of caring for older people with intellectual disabilities - it helps to increase their attention to psychosocial aspects of the ageing process when providing day-to-day care to older people with intellectual disabilities

SensorShoe: Mobile Gait Analysis for Parkinson's Disease Patients

We present the design and initial evaluation of a mobile gait analysis system, SensorShoe. The target user group is represented by Parkinson's Disease patients, which need continuous assistance with the physical therapy in their home environment. SensorShoe analyses the gait by using a low-power sensor node equipped with movement sensors. In addition, SensorShoe gives real-time feedback and therapy assistance to the patient, and provides the caregivers an effective remote monitoring and control tool

Integrated emotion-oriented care for older people with ID:Defining and understanding intervention components of a person-centred approach

An increase in descriptive evidence regarding person‐centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well‐being and quality of life. A specific Dutch example is the Integrated Emotion‐Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in‐depth understanding of the use of these components in the day‐to‐day support of older people with ID. A content analysis of five key documents was carried out. Five semi‐structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus‐group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion‐Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion‐Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed

Support needs of older people with intellectual disabilities:An exploratory study among psychologists in the Netherlands

Background:  Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs.  Method:  A mixed-method design was conducted, in which 11 semi-structured interviews were held with psychologists to gain insight into the support needs of older people with intellectual disabilities.  Results:  The data provide an overview of the support needs of older people with intellectual disabilities in all quality-of-life (QoL) domains. Physical well-being, emotional well-being, interpersonal relationships and self-determination were identified as the most important domains for older people with intellectual disabilities.  Conclusions:  The findings of this study may guide the development of a specific training for support staff and constitute a valuable contribution to raising awareness among support staff concerning the broad range of support needs existing among older people with intellectual disabilities

A thematic analysis into the experiences of people with a mild intellectual disability during the COVID-19 lockdown period

Background. The COVID-19 pandemic is expected to have a substantial impact on people with an intellectual disability. The goal of the current study was to explore the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period in the Netherlands. Method. A descriptive qualitative methodology was conducted, using semi-structured individual interviews with six people with a mild intellectual disability. Data were analysed thematically. Results. Three overarching themes were found: (i) Missing social contact and having people close; (ii) Being housebound has changed my daily life; and (iii) Hard to understand the preventive measures. Conclusions. Important insights into the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period were gained. These insights are valuable with respect to a potential second COVID-19 wave or a future infection-outbreak

Differential Effect of TLR2 and TLR4 on the Immune Response after Immunization with a Vaccine against Neisseria meningitidis or Bordetella pertussis

Neisseria meningitidis and Bordetella pertussis are Gram-negative bacterial pathogens that can cause serious diseases in humans. N. meningitidis outer membrane vesicle (OMV) vaccines and whole cell pertussis vaccines have been successfully used in humans to control infections with these pathogens. The mechanisms behind their effectiveness are poorly defined. Here we investigated the role of Toll-like receptor (TLR) 2 and TLR4 in the induction of immune responses in mice after immunization with these vaccines. Innate and adaptive immune responses were compared between wild type mice and mice deficient in TLR2, TLR4, or TRIF. TRIF-deficient and TLR4-deficient mice showed impaired immunity after immunization. In contrast, immune responses were not lower in TLR2−/− mice but tended even to be higher after immunization. Together our data demonstrate that TLR4 activation contributes to the immunogenicity of the N. meningitidis OMV vaccine and the whole cell pertussis vaccine, but that TLR2 activation is not required

Bright light treatment of depression for older adults [ISRCTN55452501]

BACKGROUND: The incidence of insomnia and depression in the elder population is significant. It is hoped that use of light treatment for this group could provide safe, economic, and effective rapid recovery. METHODS: In this home-based trial we treated depressed elderly subjects with bright white (8,500 Lux) and dim red (<10 Lux) light for one hour a day at three different times (morning, mid-wake and evening). A placebo response washout was used for the first week. Wake treatment was conducted prior to the initiation of treatment, to explore antidepressant response and the interaction with light treatment. Urine and saliva samples were collected during a 24-hour period both before and after treatment and assayed for aMT6s and melatonin respectively to observe any change in circadian timing. Subjects wore a wrist monitor to record light exposure and wrist activity. Daily log sheets and weekly mood (GDS) and physical symptom (SAFTEE) scales were administered. Each subject was given a SCID interview and each completed a mood questionnaire (SIGH-SAD-SR) before and after treatment. Also, Hamilton Depression Rating (SIGH-SAD version) interviews were conducted by a researcher who was blind to the treatment condition. A control group of healthy, age-matched, volunteers was studied for one day to obtain baseline data for comparison of actigraphy and hormone levels. RESULTS: Eighty-one volunteers, between 60 and 79 years old, completed the study. Both treatment and placebo groups experienced mood improvement. Average GDS scores improved 5 points, the Hamilton Depression Rating Scale (HDRS) 17 scores (extracted from the self-rated SIGH-SAD-SR) improved 6 points. There were no significant treatment effects or time-by-treatment interactions. No significant adverse reactions were observed in either treatment group. The assays of urine and saliva showed no significant differences between the treatment and placebo groups. The healthy control group was active earlier and slept earlier but received less light than the depressed group at baseline. CONCLUSION: Antidepressant response to bright light treatment in this age group was not statistically superior to placebo. Both treatment and placebo groups experienced a clinically significant overall improvement of 16%