Rev. Matthias Dargel

Teilhabe

The Theodor Fliedner Foundation was founded in 1844 in Duisburg by Theodor Fliedner, who started the Deaconess Movement a few years before in Kaiserswerth. It was named Pastoralgehülfen- und Diakonenanstalt.

The goal of this Diakonenanstalt was 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 Hinrich Wichern, who had founded the Rauhe Haus in Hamburg as a home for young neglected males and trained male helpers for this purpose.

The Diakoniegemeinschaft e.V. evolved from this work.

Theodor Fliedner Foundation - Beginnings

2

Theodor Fliedner Foundation - TodayImportant impulses came from Haus Siloah (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 Muelheim facilities 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 Fliedner Foundation and more than 2.000 persons are

employed.

3

4

Dementia,Aging and

Intellectual Disabilities

New: Older adults with intellectual disabilitiesWhat makes 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% of people with ID living in group home settings are 65 or older- Statistical forecasts vary due to lack of data

Specialized concepts have to be developed to accommodate the needs of older adults with ID

5

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

6

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)

7

Case example: Josef We started with

– establishing daily routines with failure-free activities– environmental modifications such as pictures at his room door

or 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

Because of environmental changes and adaptationsas well as specialized care programs for people with ID and dementia, Josef can stay at the Village - a place where he has been living for over 30 years now!

8

ID and dementia – what‘s known

Rate of occurrence- Age-cohort percent is 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 of the Alzheimer‘s type in DS (due to tripple chromosome 21 which is associated with amyloid precursor protein)

Onset and durationAverage onset age in early 50s for DS – late 60s for others

Behavioral changesPersonality change & memory loss

Neurological signsLate 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

9

ID and dementia – what we doIf 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)

10

ID and dementia – what we doIf 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

11

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

12

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!

13

14

Attachment

Contact

Theodor Fliedner FoundationRev. Matthias Dargel (CEO)Fliednerstr. 2D-45481 Muelheim an der Ruhr

matthias.dargel@fliedner.dewww.fliedner.de

Intellectual disabilities and dementia Life expectancy of individuals with intellectual 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

15

ID and dementia – what we doAssessment 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 changeConfusion Psychological and physical symptomsLoss of skills Sleep disturbanceSocial withdrawal Speech abnormalities

16

*always pay attention to possible diagnostic overshadowing and floor effects!

ID and dementia – what we doAssessment 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!

17