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Rev. Matthias Dargel

Teilhabe. Rev. Matthias Dargel. Theodor Fliedner Foundation - Beginnings.

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Rev. Matthias Dargel

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  1. Teilhabe Rev. Matthias Dargel

  2. Theodor Fliedner Foundation - Beginnings The Theodor FliednerFoundation was founded in 1844 in Duisburg by Theodor Fliedner, who started the Deaconess Movement a few years before in Kaiserswerth. It was namedPastoralgehülfen- und Diakonenanstalt. The goal of this Diakonenanstaltwas to be a training center for male deacons. It followed the inspiration and example of the Hamburg pastor and founder of the Innere Mission,Johann HinrichWichern, who had founded the RauheHaus in Hamburg as a home for young neglected males and trained male helpers for this purpose. The Diakoniegemeinschafte.V. evolved from this work.

  3. Theodor Fliedner Foundation - Today Important impulses came from HausSiloah (1879), probably the oldest clinic for alcohol addiction treatment in Europe. Today it belongs to the Fliedner Hospital Ratingen. All the buildings of the Duisburg foundation were destroyed in World War II. The Muelheimfacilities were completely rebuilt. Today the foundation is engaged in workingwith the disabled, in geriatric care andhomes for the elderly, in clinics for psychiatry and psychotherapy as well as in education,research and teaching. A special feature is theturning of conventional homes into integrated living and life forms. Today more than 30 facilities belong to the Theodor FliednerFoundation and more than 2.000 persons are employed.

  4. Dementia,Aging andIntellectual Disabilities

  5. New: Older adults with intellectual disabilities Whatmakes the situation in Germany different? „Euthanasia“ during NS dictatorship • More than 120.000 people with ID or psychiatric disorders have been terminated Now, the first generation of people with ID reaches a higher age • 1/4 to 1/3 of all people with ID living in Germany are 50 years or older • More than 30% ofpeoplewithID living in group home settings are 65 or older • Statistical forecastsvary due to lack of data Specialized concepts have to be developed to accommodate the needs of older adults with ID

  6. Case example: Josef • 62 years old man, Down´s syndrome • lives at the Village in Muelheim an der Ruhr for over 30 years • was almost independent in ADL • was able to speak in short sentences • worked at the sheltered workshop • loves to sing and to play soccer

  7. Case example: Josef • In 2010 first observation of: • changes in daily living and work habits • Memory loss and extreme frustration due to functional losses • Reduced zest for life • Increased confusion and anxiety • Communication difficulties • As progression continues: • Difficulties recognizing family, friends and staff • Disengagement from familiar activities (playing soccer) • Restlessness, pacing, and agitation • Challenging behavior (tried to beat roommate) • Had to retire from sheltered workshop! • Neuropsychological testing and staff interview gave strongincidence for Alzheimer‘s Disease • Referral to memory clinic in 2011 • January 2011 confirmation of AD (CT and laboratory diagnostic)

  8. Case example: Josef • We started with • establishing daily routines with failure-free activities • environmental modifications such as pictures at his room dooror bathroom, reduction of reflective surfaces, reduction of ambient sound levels, changes in furniture, providing floor markers • use of snoezelen, aromatherapy and music therapy to reduce challenging behavior • designing memory aids such as scrapbooks with personal photos • changes in diet to more calorie intake in consequence of increased need due to excessive wandering • using walking aids • Today: • complete loss of communication skills • complete dependency in all activities of daily living • cannot walk without assistance Becauseof environmental changes and adaptationsas well as specialized care programsfor people with IDand dementia, Josef can stay at the Village- a place where he has been living for over 30 years now!

  9. ID and dementia – what‘s known • Rate ofoccurrence • Age-cohortpercentis same as in general population for adults with ID • Much higher prevalence & neuropathology indicative of AD in most adults with DS • Dementia type • Type of dementia differs between DS and other types of intellectual disability • Generally more dementia ofthe Alzheimer‘s type in DS (due to tripple chromosome 21 which is associated with amyloid precursor protein) • Onset and duration Average onset age in early 50s for DS – late 60s for others • Behavioral changes Personalitychange & memory loss • Neurological signs Late onset seizures found in 12%-84% of adults w/DS • Prognosis • Aggressive forms of AD can lead to death within 2 years of onset in adults with DS • 2-7 years duration in average

  10. ID and dementia – what we do If there is a reasonable suspicion of dementia: Referral to department of gerontopsychiatry and memory clinic to get diagnosis confirmed • Further functional and mental status exam • Physical exam and laboratory tests • Brain scans (CT or MRI)

  11. ID and dementia – what we do If diagnosis of dementia is confirmed: “Aging in place” has first priority • Identifying and planning to remediate environmental challengessuch as accessibility and lighting • Establishing a daily regime that provides for purposeful engagement based on individual needs and preferences • Standardization of routines • Redesigning “failure-free” day activities and programs so that participation in valued activities and opportunities for interaction with others continues • Using memory aids (such as scrap or memory books, photos, posters…) and orientation aids (such as pictures, different colors) • Using assistive devices such as mobility aids, communication devices, hearing aid • Consistent monitoring of medications being taken to prevent adverse drug reactions

  12. ID and dementia – what we do If diagnosis of dementia is confirmed: • Dietary changes: • Finger food or smoothies (require less assistance) • Providing foods more easily eaten without choking • Adapt calories intake to person’s needs • Aromatherapy, music therapy, physical activities • Singing, gardening, reading aloud, opportunities for tactile participation • Using valued items that orient to self, people, andenvironment (e.g. photos, memory books) • Familiar spiritual practices and/or religious rituals • Prepare for end-of-life supports

  13. ID and dementia – what we do • Working with interdisciplinary teams! • Remedial teacher • Nurses • Psychiatrists • Neuropsychologists • Occupational therapists • Physical therapists • Continued education to staff about all issues of dementia and intellectual disabilities!

  14. Contact Theodor Fliedner Foundation Rev. Matthias Dargel (CEO) Fliednerstr. 2 D-45481 Muelheim an der Ruhr matthias.dargel@fliedner.de www.fliedner.de Attachment

  15. Intellectual disabilities and dementia • Life expectancyof individuals withintellectual disabilities (ID) has significantly increased over the past 50 years • This has led to an increased risk of ageing associated disability in mental and neurological functions • As with the general population dementia is a growing source of morbidity and mortality • Longevity and early aging lead to greater occurrence of dementia at an age earlier than seen in the general population • Estimates are that there are over 150.000 adults with ID worldwide affected by some form of dementia and that this number will triple over the next 20 years

  16. ID and dementia – what we do Assessment for dementia • Measure of functional baseline (that is „personal best“) after age 40 for Down´s syndrome and after age 50 for other intellectual disabilities • Neuropsychological testing *for people with ID (developed by Prof. Sandra V. Müller from the Ostfalia University of applied sciences, Wolfenbüttel, Germany) • Caregiver / staff interview* using the German version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities DSQIID (Deb et al, 2007) -> observer rated questionnaire covering: Loss of memory Behavior change Confusion Psychological and physical symptoms Loss of skills Sleep disturbance Social withdrawal Speech abnormalities *always pay attention to possible diagnosticovershadowing and floor effects!

  17. ID and dementia – what we do Assessment for dementia Conduction of differential diagnosis to rule out reversible conditions • such conditions can include stroke, depression, medication reactions, thyroid deficiency, brain tumors, nutritional deficiencies • Significant recent (traumatic) life events (e.g. victimization/abuse, changes in staff close to the person, interpersonal conflicts) • enables us to ascertain comorbidities that may be linked to functional decline related to dementia. • gives us data on newly emerging conditions versus lifelong conditions which are important to assessing neuro-developmental changes. Reapplication of assessment measures at periodic intervals of 6 months to look for changes from baseline!

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