archiv – LHÖ – medizin KRANKHEIT – ALTER

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ARCHIV Medizin 2009 Gesundheit für„ Leben – Potsdam
Unterlagen – MB 2010 – Teil 5, Themenheft 29
archiv – LHÖ – medizin
KRANKHEIT – ALTER - MENSCHEN
MIT INTELLEKTUELLER BEHINDERUNG
Fachtagung "Gesundheit für's Leben", Potsdam 2009.
Veranstaltung der Bundesvereinigung Lebenshilfe
und der BAG Ärzte für Menschen
mit geistiger oder mehrfacher Behinderung
Teil 5
THEMENHEFT 29
Inhalt:
Fachartikel, Referate
Seite
3
Zusammenstellung:
Dr. Maria BRUCKMÜLLER
Wien 2010
[email protected]
1
FACHBEITRÄGE:
HARTMANN, Barbara: Welche Voraussetzungen sind notwendig, um Menschen mit einer schweren Erkrankung in unseren Einrichtungen begleiten
zu können? Dozentin für Palliativ Care Kurse. Potsdam 2009.
Seite 3
LEBENSHILFE LUDWIGSHAFEN: Pflegerische Versorgung und Betreuung
von Menschen mit geistiger und mehrfacher Behinderung im Krankenhaus.
Seite 6
BERGER, Dr. med. Friedegund/ ZSCHERNACK, Dr. med. Kurt: Vorsorgeuntersuchungen bei Menschen mit geistiger Behinderung. Konferenz Potsdam 2009.
Seite 8
REKER, Dr.Martin: Abhängigkeiten bei Menschen mit geistiger Behinderung: Ärztliche Grundannahmen für die Suchtbehandlung geistig behinderter Menschen. Evangelisches Krankenhaus Bielefeld – Bethel. Potsdam
Konferenz 2009.
Seite 15
BEYER, Friederike/ STAMM, Dr. Christine: Sehbeeinträchtigungen bei Menschen mit geistiger Behinderung. Medizinische und pädagogische Diagnostik, Behandlungsansätze und Intervention. Berlin. Konferenz Potsdam
2009.
Seite 20
SCHANZE, Dr.med. Christian: Psychische Erkrankungen bei älteren Menschen mit geistiger Behinderung. Krkh. St.Camillus, Ursberg/D. Konferenz
Potsdam 2009.
Seite 27
CARPENTER Dr.: Learning difficulties: an information and resource file for
hospital staff. Unterlagen 2004 (Anhang).
Seite 34
2
Barbara HARTMANN
Dozentin für Palliativ Care Kurse
Potsdam 2009
WELCHE VORAUSSETZUNGEN
SIND NOTWENDIG, UM MENSCHEN
MIT EINER SCHWEREN ERKRANKUNG
IN UNSEREN EINRICHTUNGEN
BEGLEITEN ZU KÖNNEN?
„Es ist noch nicht so weit!“ – Angst vor den Auseinandersetzungen mit der eigenen Endlichkeit:
Angst:
Kann und schaffe ich das ?
Was, wenn die Pflege und der medizinische Bedarf an meine Grenzen stößt?
Was tun im Notfall?
Wie ehrlich kann/ darf ich sein?
Wie gehe ich mit den Mitbewohnern und den Angehörigen um?
Was muß ich organisieren?
Was ist der Wille des Kranken?
Wo bekomme ich Hilfe?
Was tun im ethischen Konfliktfall?
Was mache ich im Todesfall?
Wie versorge ich einen Verstorbenen?
4 Säulen der Begleitung:
Medizinische
Begleitung
Pflegerische
Begleitung
Psychosoziale
Begleitung
Spirituelle
Begleitung
Organisation
3
1. VERNETZUNG:
Tagesstätte
Bezirk
Mitarbeiter
Krankenhäuser
Krankenkasse
Apotheke
Wohnen
Bewohner
Seelsorge
Angehörige
HeimAufsicht
Personal
Mitbewohner
Hausarzt
Ehrenamtliche
PalliativStation
Hospizverein
Fachärzte
Medizinische
Dienstleister
2. STRUKTUR:
Tagesstätte
Bezirk
HeimAufsicht
Mitarbeiter
Krankenhäuser
Krankenkasse
Apotheke
Wohnen
Bewohner
Seelsorge
Angehörige
Personal
Mitbewohner
Hausarzt
Ehrenamtliche
PalliativStation
Hospizverein
Fachärzte
Medizinische
Dienstleister
Gesellschaft / Umfeld – Unterstützung / Entlastung
4
Aufgaben:
Bildung einesw Netzwerks;
Ansprechpartner für Netzwerk;
Management von Überleitungen;
Anleitung der MitarbeiterInnen in pflegerischer/ medizinischer Versorgung;
Einhaltung gesetzlicher Richtlinien;
Organisation einer ethischen Fallbesprechung;
Krisenplanung;
Angebot von Fortbildungen.
3. ERFASSUNG VON WERTVORSTELLUNGEN UND
WÜNSCHEN IM RAHMEN EINER BIOGRAPHIEARBEIT:
Erfassung der Vorstellungen für die letzte Lebenszeit,
für das Sterben,
die Aufbahrung und die Bestattung.
4. WEITERBILDUNG VON MITARBEITENDEN
IN PALLIATIVEN KOMPETENZEN, FERTIGKEITEN
UND DER HOSPIZLICHEN HALTUNG:
„Das Sterben eines Menschen bleibt als wichtige Erinnerung zurück bei
denen, die weiterleben. Aus Rücksicht auf den Sterbenden ist es unsere
Aufgabe, einer seits zu wissen, was Schmerz und Leiden verursacht, andererseits zu wissen,wie wir diese Beschwerden effektiv behandeln können.
Was immer in den letzten Stunden eines Menschen geschieht, kann viele
bestehende Wunden heilen, es kann aber auch als unerträgliche Erinnerung verbleiben, die den Weg durch die Trauer verhindert.“
Cicely Saunders, 1918 – 2005
Krankenschwester und Ärztin
5
Lebenshilfe Ludwigshafen
Potsdam Konferenz 2009
PFLEGERISCHE VERSORGUNG UND
BETREUUNG VON MENSCHEN MIT
GEISTIGER UND MEHRFACHER
BEHINDERUNG IM KRANKENHAUS
Ausgangslage:
Menschen mit geistiger und mehrfacher Behinderung machen während
eines Krankenhausaufenthaltes häufig deprimierende und schwierige Erfahrungen, wenn es um ihre erforderliche Pflege und Betreuung geht.
Die individuelle und verlässliche Unterstützung und Pflege durch vertraute
Personen, auf der einen und durch das Pflegepersonal auf der anderen
Seite, sind aber wesentliche Voraussetzungen für die Wiederherstellung
der Gesundheit.
Was macht die derzeitige Situation schwierig?
Arbeitsbedingungen des Pflegepersonals;
Ausstattung und räumliche Situation in den Krankenhäusern;
Lebenssituation des Menschen mit Behinderung:
mangelnde Unterstützungsangebote von außen,
Kommunikationsprobleme,
fehlende Einsicht beim Patienten,
Verhaltensweisen, die dem Pflegenden fremd sind,
finanzielle und rechtliche Grundlagen.
Konsequenzen:
Die Vorbereitung der Aufnahme
1. Durch die Verantwortlichen der Station,
2. Durch die Angehörigen, gesetzlichen Betreuer, der Mitarbeiter
von Einrichtungen und Diensten;
Einflussnahme der Verbände und Gremien auf Politik und Kostenträger
durch entsprechende Forderungen;
Einbindung von möglichen Kooperationspartnern.
6
Hinweise:
Pflegerische Versorgung und Betreuung von Menschen mit geistiger und
mehrfacher Behinderung im Krankenhaus. (Gemeinsame Empfehlung des
Deutschen Pflegeverbandes und des Landesverbandes Rheinland – Pfalz in
Zusammenarbeit mit dem Klinikum Ludwigshafen/ Rhein).
7
Dr. med. Friedegund BERGER
Dr. med. Kurt ZSCHERNACK
Konferenz Potsdam 2009
VORSORGEUNTERSUCHUNGEN BEI
MENSCHEN MIT GEISTIGER BEHINDERUNG
Vorsorge:
Vorsorge, d.h. Prävention ist eine medizinische Strategie, die den Prozess
der Karzinogenese, bzw. der Krankheitsentstehung durch den Einsatz von
Nahrungsergänzungsmitteln, Medikamenten, sowie eine Umstellung der
Lebens- und Ernährungsgewohnheiten unterbinden oder hemmen soll.
Früherkennung:
Früherkennung ist eine medizinische Strategie, bzw. Untersuchungsfolge,
die die Erkrankung zum frühestmöglichen Zeitpunkt erkennt, um eine Progression zu verhindern oder eine Heilung zu erreichen.
Sozioökonomische Bedeutung:
Aufgrund der steigenden Lebenserwartung der Menschen mit geistiger Behinderung und der immer knapper werdenden Ressourcen im Gesundheitswesen wird die sozioökonomische Bedeutung der Kosten für die Früherkennung in den kommenden Jahren weiter zunehmen.
Die Früherkennungsuntersuchungen müssen sich in diesen Rahmen einfügen.
Epidemiologie:
Brust
Gebärmutterhals
Gebärmutterkörper
Eierstock
Jährliche
Neuerkrankung
57.230
6.190
(140.000
Konisationes)
11.700
9.660
Erkrankungsalter
64 a
50 a
67 a
66 a
5 – Jahres –
Überleben
81 %
61 %
82 %
47 %
8
Prostata
Hodenkrebs
Niere
Blase
Jährliche
Neuerkrankung
48.650
4.350
16.700
25.950
Erkrankungsalter
69 a
36 a
67 a
72 a
5 – Jahres –
Überleben
82 %
98 %
67 %
75 %
(Epidemiologisches Krebsregister Niedersachsen 2005)
Risikofaktoren –
Krebsenstehung gynäkologischer Tumore:
Rauchen
Ernährung
Gewicht
Langjährg.
Östrogeneinfluss
Vererbung
Infektion
Gesamt
Brust
30 %
30 %
(X)
5%
5%
Geb.
Körper
Geb.
Hals
Eierstock
X
(X)
X
X
X
X
X
X
X
X
(Epidemiologisches Krebsregister Niedersachsen 2005)
Empfohlene tägliche Calciumaufnahme:
Kinder ab 1 Jahr
Kinder u. Jugendliche
Erwachsene
Schwangere, Stillende
Ältere Menschen
800 mg
1.000 – 1.200 mg
1.000 – 1.200 mg
1.000 – 2.000 mg
1.500 mg
9
Süßigkeiten
Tierische Fette
Wurst, Butter
Fleisch, Wurst
Eier
Fettarm
2-3 pro Woche
2-3 Stk. Pro Woche
Pflanzenöle
1 – 2 Eßlöffel täglich
Fisch
Milch/
Milchprodukte
1 – 2 x/ Woche
fettarm
2 x täglich
Gemüse
Hülsenfrüchte
2 – 3 x täglich
Obst
2 x täglich
Getreideprodukte/ Brot, Teigwaren
Reis, Kartoffeln
mehrmals täglich
Körperliche Aktivität
Getränke
mindestens ½ Std. täglich
mind. 1,5 l täglich
Calciumhaltige Lebensmittel:
200 ml
150 g
200 g
60 g
60 g
60 g
60 g
Milch
Joghurt
Speisequark
Emmentaler
Gouda
Edamer
Camenbert
240
170
130
612
490
475
342
mg Ca
mg Ca
mg Ca
mg Ca
mg Ca
mg Ca
Mg Ca
200
200
200
200
Grünkohl
Broccoli
Lauch
Fenchel
424
220
240
218
mg
mg
mg
mg
Mineralwasser
200-600 mg Ca
g
g
g
g
1 Liter
Ca
Ca
Ca
Ca
10
Urologische Früherkennungsuntersuchung der
Gesetzlichen Krankenkasse umfasst:
 Körperliche Untersuchung
 Digitale rektale Untersuchung
 Urinstix
 Untersuchung des Stuhl auf occultes Blut
Der Umfang dieser Früherkennungsuntersuchung wird dem Menschen mit
geistiger Behinderung nicht gerecht.
Eine sinnvolle urologische Früherkennungsuntersuchung beim
Menschen mit geistiger Behinderung sollte folgende Leistungen
umfassen:
 Anamnese des Patienten bzw. der Betreuungsperson hinsichtlich des
Blasenentleerungs- und Stuhlverhaltens, sowie eine komplette Medikamentenuntersuchung,
 Körperliche Untersuchung,
 Digitale rektale Untersuchung,
 Sonographie der Nieren, der Blase, der Prostata und bei Bedarf der
Hoden,
 Laborchemische Untersuchungen.
Anamnese:
Die Miktionsanamnese kann wichtige hinweise auf die Blasenentleerung
(z.B. Restharnbildung, Überlaufblase und Blasenkapazität) liefern;
Auch bei Menschen mit geistiger Behinderung muss eine inkontinenz kein
unabwendbares Schicksal sein.
Zahlreiche Medikamente haben Wirkungen auf die Blasenentleerung, oft
kann durch eine Änderung oder Anpassung der Medikation eine günstige
Beeinflussung der Miktionsverhältnisse erreicht werden.
Körperliche Untersuchung:




Klopfschmerzhafte Nierenlager (Nierenstauung),
Druckschmerzhafte Harnleiterverläufe (Steinanamnese),
Blasenfüllung (Überlaufblase, Restharnbildung),
Äußeres Genitale (Phimose, entzündliche Veränderungen, Peniscarcinom),
 Scrotum (Lageanomalien der Hoden, Spermatocele, Hydrocele, Variocele, Hodentumor, entzündliche Veränderungen).
11
Digitale rektale Untersuchung:






Analekzem,
Haemorrhoiden,
Analfissuren,
Analkanalstenose,
Rektumcarcinom,
Größe und Dignität der Prostata.
Urosonographie:





Sonographie beider Nieren zur Lagekontrolle,
Ausschluss einer Nephrolithiasis,
Ausschluss einer Hydronephrose,
Ausschluss einer Raumforderung.
Sonographie der Blase (möglichst nach der Miktion):
Restharnbildung,
größerer Blasentumor,
Blasenstein;
 Sonographie der Prostata (evtl. transrectal:
Größenbestimmung,
Dignität (?)
Laborchemische Untersuchungen:





Urinsediment (Erythrozyt-, Leukozyt- und Bakterieurie),
Urinstix (Proteinurie, Glucosurie, Nitritnachweis),
Bei bestehender Leukozyturie eine Urinkultur,
Kreatinin oder besser die Glomeruläre Filtrationsrate (GFRD).
Prostataspezifisches Antigen (PSA):
erste Bestimmung mit 45 Jahren (bei einem Wert über 2,5 yg/l erneute Bestimmung nach einem Jahr,
ab dem 50 Lebensjahr Bestimmung im 2 – 3 jährigen Abstand,
bei Risikopatienten (Prostatacarcinom in der Familienanamnese)
erste Bestimmung mit 40 Jahren,
ab dem 70.-72. Lebensjahr PSA-Bestimmung nur bei Verdacht.
 Stuhl auf occultes Blut.
Gynäkologische Krebsfrüherkennung:







Frauen ab 20 Jahren,
Alle 12 Monate,
Anamnese,
Untersuchung,
Brustuntersuchung (ab 30.Lebensjahr),
Mammographie-Sreening (50.-69 Lebensjahr),
Darmuntersuchung:
Tasten ab 50. Lebensjahr,
12
Stuhlbrief 50 – 55. Lebensjahr,
Koloskopie ab 55. Lebensjahr.
 Ggfs. Bild Abstrichentnahme, Cytologie, Zellen.
 HPV – Impfung:
Es stehen 2 Impfstoffe zur Verfügung:
Gardasil 16 + 18; 6 + 11 seit 9/2006,
Cervarix 16 + 18 seit 9/2007.
Vorbereitung auf eine gynäkologische Untersuchung:
Allgemeine Anamnese
 Diagnose, Art der Behinderung
 Medikamente
 Nikotin
 Impfungen
 Allergien
 Zyklus (Abstand, Länge, Stärke, Beschwerden)
 Operationen
 Familienanamnese:
Karzinome,
Thrombosen,
Herzinfarkte,
Diabetes,
 Sexualität, Jungfrau?
 Größe,
 Aktuell: Datum;
Begleitung durch:
 Gewicht
 Letzte Periode; Veränderung?
 Beschwerden?
 Fragestellung.
„Fahrplan“ Gynäkologie:
Beobachtung des Allgemeinbefindens:
 Einmal im Monat Tastuntersuchung der Brustdrüsen,
ggf. des Bauches,
 Einmal im Jahr gynäkologische Untersuchung,
ggfs. Früherkennungsuntersuchung oder Ultraschall,
 50.-69.Lj. Mammographiescreening,
 Ab 50.Lj. Stuhluntersuchung auf Blut,
 Ab 55. Lj. Koloskopie,
 Hepatitis B – Impfung,
 HPV – Impfung.
13
Wechseljahre – Phasen hormoneller Veränderungen:
40. –


48. –


48. Lj.: Prämenopause:
Prämenstruelles Syndrom (PMS)
Zyklusstörungen.
52. Lj.: Perimenopause:
Wechseljahresbeschwerden
Zyklusstörungen
52. –



62.Lj.: Postmenopause:
Wechseljahresbeschwerden,
Vermännlichung,
Ostoeporose.
Zusammenfassung:




Vorsorge mit Hilfe der Mitarbeiter in der Wohngruppe,
Angepasste Früherkennungsmaßnahmen,
Impfungen (Hepatitis B, HPV),
Ausgleich z.B. von Hormondefiziten bei Beschwerden.
14
Dr. Martin REKER
Evg. Krankenhaus Bielefeld-Bethel
ABHÄNGIGKEITEN BEI MENSCHEN
MIT GEISTIGER BEHINDERUNG:
ÄRZTLICHE GRUNDANNAHMEN
FÜR DIE SUCHTBEHANDLUNG
GEISTIG BEHINDERTER MENSCHEN
Schädlicher Gebrauch/ Missbrauch (nach ICD-10):
Mindestens eines der vier folgenden Kriterien zeigte sich wiederholt in den
letzten zwölf Monaten:
1. Erhebliche Probleme bei der Haushaltsführung, in der Familie, am
Arbeitsplatz oder in der Schule wegen Suchtmittelgebrauch;
2. Suchtmittelgebrauch in gefährlichen Situationen (z.B. selbstgefährdendes Verhalten im Straßenverkehr);
3. Probleme mit dem Strafgesetz wegen (oder infolge von) suchtmittelgebrauch;
4. Soziale und zwischenmenschliche Probleme wegen Suchtmittelgebrauch.
Abhängigkeit (nach ICD-10):
Mindestens drei der 8 folgenden Kriterien zeigten sich irgendwann gemeinsam in den letzten zwölf Monaten:
1. Starker Wunsch / Zwang zu konsumieren;
2. Verminderte Kontrollfähigkeit;
3. Toleranzentwicklung;
4. Konsumieren, um Entzug zu lindern oder zu vermeiden;
5. Körperliches Entzugssyndrom;
6. Eingeengtes Verhaltensmuster;
7. Fortschreitender Interessenverlust;
8. Anhaltender Konsum trotz schädlicher Folgen.
Warum stellt die Diagnose und Behandlung von geistig behinderten Menschen mit Suchtproblematik eine besondere Herausforderung dar?
15
Geistig Behinderte mit Suchtroblematik
 Können ihr Verhalten nicht so gut an langfristigen Konsequenzen
orientieren,
 Haben größere Probleme, sich Phänomene wie Craving und Black
outs zu vergegenwärtigen, um es in ihre Handlungsplanung zu
übernehmen,
 Reagieren gegenüber Rauschmitteln oft empfindlicher.
Externe
Auslöser
Interne
Auslöser
Verhalten
kurzzeitige
positive
Verstärker
Mit wem
Trinkt Ihr
Partner?
Was trinkt
Ihr Partner
Für gewöhnlich?
Was glauben
Sie gefällt
Ihrem Partner
Daran, gemeinsam zu
trinken?
Wo trinkt
Ihr
Partner?
Wie viel
trinkt Ihr
Partner
gewöhnlich?
Wann
Trinkt Ihr
Partner?
Wie lang
sind die
Trinkphasen?
Was glauben
Sie denkt
Ihr Partner
bevor er Alkohol
konsumiert?
Was glauben Sie
fühlt Ihr Partner
bevor er Alkohol
konsumiert?
langfristige
negative
Konsequenzen
Was glauben
Sie sind die
negativen
Auswirkungen des
Trinkverhaltens Ihres
Was glauben
Partners beSie gefällt
zogen auf
Ihrem Partner die folgendaran, an
den Bereidiesem Ort
che:
zu trinken?
A: Zwischenmenschlich;
… zu diesem
B: Körperlich;
Zeitpunkt zu
C: Emotional
trinken?
D: Rechtlich
E: Arbeit
Welche angeF: Finanziell
nehmen Gedanken könnte Ihr Partner
während des Trinkens haben?
Welche angenehmen
Gefühle könnte Ihr
Partner während des
Trinkens empfinden?
16
Wer Menschen mit übermäßigem Substanzkonsum helfen will, das Verhalten unter Kontrolle zu bringen, muss verstehen, wodurch dieser missbräuchliche oder süchtige Konsum motiviert ist.
Wichtig dafür ist die Herausarbeitung von Triggern (Auslösern).
Wichtig ist zudem:
Einschränkung von Verstärkern für Konsumverhalten;
Unterstützung von Verstärkern für abstinenzorientiertes Verhalten.
Nicht vergessen werden darf die Bedeutung von Modell-Lernen
 in der Peer Group,
 in Wohnumfeld und Familie,
 bei BetreuerInnen und TherapeutInnen.
Betreuungspersonen haben in Besonderem Maß eine Modellfunktion für
behinderte Menschen.
Von herausragender Bedeutung ist für alle Menschen mit Suchtmittelproblemen die Frage: wenn Rauschmittel kurzfristig eine angenehme Wirkung
haben, was macht es lohnend, darauf zu verzichten?!
Geistig behinderte Menschen müssen aufhören können wollen. Man spricht
auch von Motivation.
Welche Therapieoptionen stehen für geistig behinderte Menschen zur Verfügung?
Welche Bedeutung haben Regeln und Kontrollen durch Atemalkoholmessung und Urinscreenings?
Wenig wissenschaftlich evaluiert erscheint die Bedeutung medikamentöser
Hilfen zur Konsumkontrolle:
 Anti-Craving-Substanzen (Acamprosat, Naltrexon),
 Aversive Substanzen (Disulfiram),
 Agonisten ( Substitution und Originalstoffvergabe).
Ähnliches gilt für Medikamente zur Behandlung der Nikotinabhängigkeit:
 Bupropipon (senkt die Anfallsschwelle),
 Vareniclin,
 Nikotinersatz.
Zum Stellenwert der Entzugsbehandlung:
Angesichts der Chronizität der Suchterkrankung ist die Entzugsbehandlung
nur sinnvoll, wenn sie gleichzeitig weitergehende Hilfen zur Sicherung der
erreichten Abstinenz vorbereitet.
17
Zur Klärung künftiger Behandlungsperspektiven:
Geht es um Abstinenzerhaltung oder um kontrollierten Konsum?
Wenn alles nichts hilft:
Zur Frage der Verantwortung in einem komplexen Hilfesystem:
Paternalismus versus Autonomismus;
Förderung von Eigenständigkeit versus Fürsorge.
Fazit:
 Suchtkrankenbehandlung bei geistig behinderten Menschen folgt den
gleichen Prinzipien wie bei anderen Patienten;
 Die Frage von Eigen- und Fremdverantwortung ist ähnlich klärungsbedürftig wie bei minderjährigen, hirngeschädigten oder psychotischen Patienten;
 Die Autonomieentwicklung bleibt oberstes Prinzip;
 Die Schutzbedürftigkeit der Betroffenen darf nicht einem überzogenen Autonomismus geopfert werden.
18
Anhang zum Thema Antabus:
Die Disulfiram – Alkohol – Reaktion (DAR):











Gefäßerweiterung („Flush“)
Schwindel
Hyperventilation
Pulsbeschleunigung
Niedriger Blutdruck
Erbrechen
Kopfschmerzen
Angst
Schweißausbrüche
Allgemeine Schwäche
Brustschmerzen
Seltene schwere Komplikationen:




Epileptische Anfälle
Kreislaufversagen
Atemdepression
Pulsverlangsamung,
Herzrhythmusstörungen, Herzstillstand
Infarkte
 Bewusstseinsstörungen
 Tod
Kontraindikationen für eine Antabus Behandlung:








Herzerkrankungen
Erkrankung der Hirngefäße
Schwere chronische Lungenerkrankung
Chronisches Nierenversagen
Psychosen und schwere Depression
Anfallsleiden
Schwangerschaft
Chronische Lebererkrankung mit Pfortaderhochdruck
19
Friederike BEYER
Hermann-Herzog-Schule Berlin
Dr. Christine STAMM
Beratungsstelle für Sehbehinderte Berlin
SEHBEEINTRÄCHTIGUNGEN BEI MENSCHEN
MIT GEISTIGER BEHINDERUNG
Medizinische und pädagogische Diagnostik,
Behandlungsansätze und Intervention.
1. Augenerkrankungen (C. Stamm):
Sehen besteht aus verschiedenen Qualitäten:










Sehschärfe
Gesichtsfeld
Kontrastsehen
Bewegungssehen
Farbensehen
Formwahrnehmung
Worterkennung
Gesichtererkennung
Auge-Hand-Koordination
Räumliches Sehen.
Diagnostik bei mäßiger Mitarbeit (ohne Aggression):
 Skiaskopie (Brillenbestimmung ohne Mitarbeit des Patienten),
 Spaltlampenuntersuchung zum Erkennen von Hornhautveränderungen und dem grauen Star (Handspaltlampe),
 Netzhautuntersuchung zum Ausschluss einer Netzhautablösung.
Häufige Augenerkrankungen im Alter:
 Fehlsichtigkeiten ( z.B. Weitsichtigkeit, Kurzsichtigkeit, Alterssichtigkeit),
 Grauer Star (Cataract),
 Altersabhängige Maculadegeneration (AMD),
 Grüner Star (Glaukom),
Foto-Simulationen dieserAugenerkrankungen finden Sie unter
http://WWW.absv.de/sbs/sbs_intro.html
20
Therapiemöglichkeiten:
 Operation des grauen Stares:
Routine-Operation, ggf. in Narkose,
 Operation einer Netzhautablösung, in Narkose,
 Operation des grünen Stares in Ausnahmefällen (in Narkose möglich).
Grenzen der Diagnostik – Grenzen der Therapie:
 Glaukom: regelmäßige Druckmessung mit Augenberührung & Augentropfengabe,
 AMD: Augenuntersuchung mit intravenöser Kontrastmittelgabe (und
konstantem Geradeausblick),
 Gesichtsfeldtest (z.B. bei Retinitis pigmentosa).
2. Pädagogische Diagnostik (F. Beyer):
Diagnostik des Sehens – Unterschiede:
Medizin:
 Welches Sehvermögen hat jemand?
 Was kann man therapeutisch tun um es zu verbessern oder zu
erhalten?
Pädagogik:
 Wie geht ein Mensch mit seinem eingeschränkten Sehvermögen um?
 Wie kann man ihn bei der optimalen Nutzung des Sehens unterstützen?
Pädagogische Diagnostik des Sehens bei
nicht sprechenden Menschen:
Beobachtung:
 In bekannter Umgebung,
 In unbekannter Umgebung,
 Bei Sehanforderungen im Nahbereich
 …. Im Fernbereich,
 …. Die mit motorischen Aktivitäten verknüpft sind (Feinmotorik und
Grobmotorik).
21
Was beobachten?
Unterschiede:
 In der Bewegungsausführung (wann und wo, sschnell, langsam, vorsichtig, mit Anfassen oder gar nicht?
 In der Motivation (welche Aktivitäten und Orte mag jemand, welche
nicht?)
Auffälligkeiten:
 In der Kopfhaltung (häufig schief),
 In der Körperhaltung.
Analyse:
Könnten die Beobachtungen mit visuellen Einschränkungen in
Zusammenhang stehen?
(z.B.: hält sich jemand bevorzugt an dunklen Orten auf?)
 Umweltbedingungen optimieren,
 Unterstützung probeweise anbieten,
 Augenuntersuchung veranlassen.
Achtung:
Sehbehinderungen auch möglich, wenn Auge und Sehnerven organisch
gesund sind! > CVI (Cerebral Visual Impairment).
Verhalten, das visuelle Beeinträchtigung anzeigen kann:
1. Auffällige Augenbewegungen oder abweichendes sehverhalten:




Nur kurzes oder ungenaues Fixieren,
Vorbeisehen,
Keine Aufnahme von Blickkontakt,
Kopfschiefhaltung, besonders beim Fixieren.







Ungenaues, vorsichtiges Greifen,
Langsames, breitbeiniges Gehen,
Anstoßen
Unsicherheit auf unebenem Boden,
Unsicherheit auf Treppen,
Stehenbleiben bei Iriitationen,
Stereotype Bewegungen.


Unsicherheit in fremder Umgebung,
Unsicherheit nur in bestimmter Umgebung, z.B. an unstrukturierten oder schlecht ausgeleuchteten Orten,
Suchen von Sicherheit durch Anfassen, Festhalten oder Entlanggleiten,
2. Motorische Auffälligkeiten:
3. Auffälligkeiten in der Orientierung:

22

Meiden besonders heller oder dunkler Orte (je nach Sehschädigung).
4. Auffälliges Nutzen anderer Sinne, sowie des Gedächtnisses:





Reaktion auf Stimme, Erschrecken bei lautlosem Anfassen,
Suchen von Körperkontakt,
Tasten (mit Händen, Füßen, Mund),
Suche nach Orientierungspunkten,
Furcht vor Geräuschen.
Immer beachten:
 Jede Sehbeeinträchtigung ist bei jedem Menschen anders,
 „Überraschende“ Sehleistungen sind normal und in Wirklichkeit
meistens Gedächtnisleistungen,
 Ein geistig behinderter Mensch simuliert nie eine Sehschädigung,
sein Verhalten hat immer einen Sinn!
Brilletragen:
 Viele Menschen mit geistiger Behinderung haben hohe Fehlsichtigkeiten!
 Umgang mit Brillen ist nicht immer einfach!
 Brille muß jährlich überprüft werden!
 Korrekter Sitz der Brille ist bei hohen Fehlsichtigkeiten wichtig!
Brille / Fehlsichtigkeit und
Verhalten I:
Daran erkenne ich Kurzsichtigkeit:
 Sehr nahes Herangehen an Dinge,
 Augen zusammenkneifen, v.a. in der Ferne.
Mögliches Verhalten kurzsichtiger Brillenträger:
 Absetzen der Brille bei Naharbeit > sinnvoll bei sehbehinderten + älteren Menschen,
 In der Nähe über den Rand gucken > Brille stimmt für die Nähe
nicht mehr, Lösung: absetzen/ Nahteil einarbeiten lassen.
Verhalten II:
Daran erkenne ich Weitsichtigkeit:
 Im Nahbereich (auch als Alterssichtigkeit): Dinge am ausgestreckten
Arm halten, Unlust und schnelle Erschöpfung bei Naharbeiten,
 Im Fernbereich: bei jungen Menschen Anstrengung, evtl. Schielen
nach innen;
im Alter: unscharfes Sehen.
23
Verhalten III:
Kurzsichtige Brillenträger:
 Andrücken der Gläser an die Augen: Brille ist zu schwach,
 Herabziehen der Brille auf die Nase: Brille ist zu stark, v.a. für die
Nähe (Nahteil nötig).
Weitsichtige Brillenträger:
 Herabziehen der Brille auf die Nase: Brille wird stärker > besseres
Sehen im Nahbereich,
besser: Nahbrille/ Nahteil.
 Andrücken der Gläser an die Augen: Brille wird schwächer (kommt
selten vor).
Nicht selten bei Menschen mit gB: Verweigerung des
Brilletragens:
Mögliche Gründe:




Gestell drückt,
Falsche Gläserwahl,
Fehlende Eingewöhnung,
Aversion gegen Berührung im Gesicht > v.a. bei stärkeren Brillenwerten nicht einfach hinnehmen!
Nach Abklärung der ersten beiden Gründe zur Gewöhnung Trainingsprogramm, Beispiel: „Getting used to glasses“ (Video, Bartiméus).
Interventionsmöglichkeiten:
1. Bei Wissen um Sehprobleme: Abstellen des pädagogischen Verhaltens darauf, z.B.:
 Ersatz von Blickkontakt durch Stimmkontakt, jede Handlung
verbal ankündigen, alles im Nahbereich anbieten,
 Orientierungshilfen geben,
 Bei Bildern/ Piktogrammen auf Größe und guten Kontrast achten,
 Auf Blendschutz achten (Basecap, Lichtschutzbrille benützen).
2. Optimierung der Umwelt für die Bedürfnisse sehbehinderter Menschen.
Zweck sehbehinderten-freundlicher Umweltgestaltung:
 Motiviert sehbehinderte Menschen, ihr Sehvermögen aktiv einzusetzen,
 Reduziert Mißerfolgserlebnisse und Stress,
 Vermeidet Entstehung von Umweltängsten,
 Kann Betroffene Aktivieren, wirkt Bewegungsängsten entgegen.
24
Kontraste:
Kontraste entstehen durch
 Wechselspiel Licht – Schatten,
 Farbkombinationen,
 Helligkeitsunterschiede.
Kontraste im Wohnbereich:
 Kontrast Geschirr – Tischdecke,
 Unterschiedliche Farben von Möbeln, Boden, Wand (keine groben
Muster),
 Markierung von Lichtschaltern: bunter Aufkleber oder bunte Umrahmung,
 Farbige Markierung von Stufen, Glastüren, kontrastarmen Hindernissen (z.B. mit schwarz-gelbem Klebeband),
 Farbige Türen oder Türrahmen,
 Leitstreifen an den Wänden, auf dem Fußboden, an den Seitenkanten von Treppen,
 Markierung von Hindernissen!
 Platzdeckchen,
 Einsatz farbiger Handtücher und Armaturen im Bad.
Blendschutz:
 Abschirmung gegen Sonnenlichteinfall,
 Keine zu starken Leuchtdichteunterschiede, gleichmäßige Ausleuchtung,
 Keine spiegelnden Oberflächen,
 Keine weißen Wände oder hellen Bodenbeläge, die Sonnenlicht reflektieren (Außenbereich).
Möglichkeiten visueller Anregungen in der Umwelt:




Kontrastreiche Window-Color-Bilder an Fenster/ Scheiben,
Kontrastreiche Bilder auf Augenhöhe,
Adaptieren von Bechern/ Flaschen o.ä. durch Bkleben, Bemalen …
Dosierter Einsatz
glitzernder, leuchtender, spiegelnder Objekte,
von Dekolampen, bzw. leuchtenden Dekoobjekten.
25
Literaturtipps:
 Publikationen und Videos von Bartiméus, NL unter
http://www.bartimeus.nl/publicaties_shop_rubriek/publicaties_shop
_english
 „Lebensperspektiven für blinde und sehbehinderte Menschen mit
weiteren Behinderungen“ unter
http://dbsv.org/ratgeber/betroffenengruppen/mehrfach-behindertemenschen/
 Broschüre „Wohnberatung für blinde und sehbehinderte Menschen“
unter http://www.pro-retina.de/deu/ueber
uns/regionalgruppen/niedeersachsen/hannover/downloads.html
 Mehrfachbehinderte, blinde und sehbehinderte Menschen brauchen
einfach mehr zum Leben! Mehrbedarf im Rahmen der beruflichen
und sozialen Eingliederung. Hg. Vom Verband für Blinden- und Sehbehindertenpädagogik e.V.
 Dietmar Böhringer: Taktile, akustische und optische Informationen
im öffentlichen Bereich. Barrierefrei für Blinde und Sehbehinderte –
Beiträge zum Bauen und Gestalten.
http://www.editionbentheim.de/index.php?_f=sta&_p=sta_blindenpaedagogik
Beratung:
 Zu Diagnostik und Förderung des Sehens bei mehrfach behinderten
Menschen:
jedes Förderzentrum für den Förderschwerpunkt Sehen;
Jede WfbM oder Wohneinrichtung für sehgeschädigte Menschen.
Kontakt:
 Beratungsstelle für Sehbehinderte Berlin.
http://www.berlin.de/bamitte/org/gesundheitsamt/sehbehinderte.html
 Beratungsstelle (Ambulanzlehrer) für Sehbehinderte der HermannHerzog-Grundschule Berlin.
 http://www.hhs-berlin.cidsnet.de
26
Dr. Christian SCHANZE
Krkh. St.Camillus, Ursberg/D
PSYCHISCHE ERKRANKUNGEN
BEI ÄLTEREN MENSCHEN
MIT GEISTIGER BEHINDERUNG
Intelligenzminderung (IM) und Alter:
 Durchschnittliche Lebenserwartung von Menschen mit IM:
ca. 1930 = 19 Jahre >
2005 = 66,1 Jahre
(USA, zitiert nach Urban K., 2007).
 Adäquate medizinische Versorgung manchmal fehlend:
hohe Selbständigkeit im Wohnumfeld > schlechterer Gesundheitszustand (Edgerton R.B. et al 1994; Kapell D. et al 1998).
 Körperliche Fitness im Alter bei Menschen mit IM deutlich schlechter
als bei der Normalbevölkerung (Rimmer J.H. 1998).
Intelligenzminderung und Erkrankungsrisiken im Alter:
 Schwierigkeiten mit dem Hören
IM institutionalisiert lebend, 50 – 59 Jahre = 70 %;
Normalpopulation 65 – 74 Jahre = 25 %.
(Lantman-de Valk H.M-J. et al 1996).
 Schwierigkeiten mit dem Sehen
mit Down-Syndrom (DS) > IM ohne DS > Normalpopulation;
(van Schrojenstein Lantman-de Valk H.M-J. et al 1996; van Allan M.I. Fung J.,
Jurenka S.B. 1999).
 Osteoporose
 Übergewicht / Adipositas
 Schlechter Zahnstatus (schlechte Prävention, schlechte prothetische
Versorgung);
 Psychiatrische Morbidität
 Verhaltensauffälligkeiten als Ausdruck körperlicher Beschwerdebilder.
27
Psychiatrische Morbidität von jüngeren und älteren
Menschen mit IM: (Fisher K., Kettl P. 2005)
Unter 65 Jahre
Psychiatrische Morbidität
Depressive Episode
Schizophrener Formenkreis
Dementielle Entwicklung
über 65 Jahre
47,9 %
9,0 %
3,0 %
2,7 %
68,7 %
9,0 %
3,0 %
21,6 %
Verhaltensauffälligkeiten (ICD-10F7x.1) bei Menschen
mit IM im Alter:
 Verstärkung von Verhaltensauffälligkeiten in verschiedenen Phasen
des Erwachsenenlebens;
 Abnahme der Intensität und Häufigkeiten von Verhaltensauffälligkeiten (Sigan L., Hartley and William E. MacLean, 2007);
 Schweres fremdaggressives Verhalten hat eine geringe Prävalenz,
aber eine hohe Komorbidität (ebd.).
Epidemiologie der Demenzen in Deutschland:
Ca. 1,000.000 Demenzkranke in der Bundesrepublik, davon 600.000 älter
als 65 Jahre ( i ) > altersabhängige Prävalenz;
 Ca. 50 – 60 % Demenzen vom Alzheimer -Typ ( ii )
 Ca 3 % präsenile Demenz vom Alzheimer-Typ ( i )
 Ca. 10 – 35 % Vaskuläre Demenz (häufig als Multiinfarktdemenz
( iii)
 Ca. 15 % Mischformen ( ii )
 Ca. 10 – 15 % andere Demenzen (z.B. Lewy-Demenz, Pick-Demenz
und die sog. Sekundären Demenzen). ( ii )
i:
ii:
iii:
Bickel H.: Dementia syndrome and Alzheimer disease. 2009
Maurer in Schaade 2004
Mielke, Heiss in Förstl 2002.
Primäre Symptome der Demenzen:
 Gedächtnisstörungen
> Kurzzeitgedächtnis
> Langzeitgedächtnis (später betroffen)
 Denkstörungen
> abstrakt – logisches Denken
> adäquate situative Einschätzung
 Orientierungsstörungen
> örtlich (zunächst an nicht alltäglichen Orten)
> später zeitlich und zur Person
28
 Neurologische Symptome
> Aphasie, Agnosie, Apraxie, epileptische Anfälle
 Verminderung von Antrieb und Aufmerksamkeit.
Demenz bei Menschen mit IM:
Widersprüchliche Ergebnisse:
 31 – 78,5 % der geistig Behinderten über 65 Jahre zeigen neuropathologische Symptome einer Alzheimer-Demenz.
(Amyloidplaques, neurofibrilläre Tangles, dystrophe Neuriten.
Barcikowaska 1989; Cole et al. 1994; Popovich et a. 1990).
 Prävalenz von Demenz bei Menschen mit IM (ohne Down-Syndrom)
ist mit der der Normalpopulation vergleichbar!
(Zigman W.B. et al 1997, 2004);
 90 % der über 40-jährigen mit Down-Syndrom > neuropathologische Symptome (Mann, 1988);
 Andere genetische Syndrome mit früher demenzieller Entwicklung
zeigen ebenfalls neurodegenerative Symptome (z.B. RETT-Syndrom,
FraX-Syndrom).
Practice Guidlines
For the Clinical Assessment and Caremanagement of Alzheimer and other
Dementias among Adults with Mental Retardation (Janicki, Heller, Seltzer
& Hogg Juni 1995; American Association on Mental Retardation):
 International Colloquium on Alzheimer Disease and Mental Retardation; Minneapolis July 1994;
 IASSID (Int. Association for the scientific Study of Intellectual Disability);
 AAMR (American Association on Mental Retardation);
 Drei Arbeitsgruppen:
>
Diagnostik (Alyward et al. 1995)
>
Epidemiologie (Zigman et al. 1995)
>
Practice Guidelines (Janicki et al., Journal of Intellectual Disability research 40, S. 374-382; 1995).
Durchschnittliche Lebenserwartung von Menschen mit
Down-Syndrom: Penrose 1949; Collmann & Stoller 1963; Thase 1982; Yang et
al. 2002)
1929
1947
1961
1988
1995
9
13,5
18
56
63
Jahre
Jahre
Jahre
Jahre
Jahre
29
Prävalenzrate von Demenzerkrankungen bei Menschen
mit Down-Syndrom in verschiedenen Altersgruppen:
(Maaskant et al. 1995)
30
40
50
60
– 39 Jahre
– 49 Jahre
– 59 Jahre
+ Jahre
0
22
46
73
%
%
%
%
Demenzdiagnostik bei Menschen mit IM:
Beispiele:
 Dementia Questionnaire for Persons with Mental Retardation (DMR);
Evenhius 1996.
 Dementia Scale for Down Syndrome (DSDS): Gedye 1995.
 Multidimensional Observations Scale for Elderly Subjects (MOSES);
Dalton et al. 1999, 2002.
 Checklist with Symptoms of Dementia (CLD); Visser 1996.
 Adaptive Behaviour Dementia Questionnaire; Prasher et al. 2004.
DMR Dementia Questionnaire for Persons with Mental
Retardation (Evenhuis 1992):
Struktur:
Fragebogen, der durch Fremdanamnese ergänzt werden soll:
 50 Fragen zu 8 Themenbereichen
 Antwortstruktur: ja / manchmal / nein
 SCS = Sum of Cognitiv Scores
 SSS = Sum of Social Scores
 Das abschließende Punktergebnis berücksichtigt im „Cut-Off“ die unterschiedlichen Grade der Intelligenzminderung
 Z.B. IQ 50 – 70 SCS > 7; SOS > 10
IQ < 35; SCS > 34; SOS > 15.
Vergleichsergebnisse verschiedener Demenztests für
Menschen mit IM (Deb & Braganza 1999):
 Geringe Sensitivität und Spezifität,
 Ergebnisse nur auf der Basis guter fremdanamnestischer Daten
möglich,
 Bezugspunkt:
Diagnose an Hand klinischer Symptome;
 Fazit:
keine deutschsprachige Version zur Zeit verfügbar,
Tests sehr verbesserungsbedürftig.
30
Aktuelle Entwicklung in Deutschland: Erlanger Modell:
 Checkliste zur Erfassung demenzieller Entwicklungen im Betreuungsalltag,
 12 – 15 Items,
 Dr. Andreas Ackermann, Institut für Psychogerontologie, Universität
Erlangen – Nürnberg.
Psychiatrische Symptome, als Frühsymptome einer demenziellen Entwicklung bei Menschen mit DownSyndrom (PIA St. Camillus n = 55):
Psychotische Symptome < 3 Jahre
erstmals
Unspezifische affektive Symptome < 3 Jahre
erstmals
keine psychischen Symptome im Vorfeld
18
14
31
24
6
Biomarker im Liquor cerebrospinalis:
Gesamt – Tau – Protein mittels ELISA
Probleme:
 Invasive Methode,
 Noch geringe Spezifität bei relativ hoher Sensitivität in der Normalbevölkerung,
 P-Tau231; Phosphorylierung an Threonin 231 (Hampel et al 2001),
 Amyloidvorläuferprotein APP > uneinheitliche Ergebnisse,
 Neuron-spezifische-Endolase > geringe Spezifität
 Neue Daten für Menschen mit Down-Syndrom:
Amyloid-ß im Liquor erhöht und ansteigend, während keine Veränderung von Tau und p-Tau im Vergleich zur Normalpopulation besteht. (Englund H. et al 2007; Kleinkinder mit DS zwischen 8 und 54 Monate).
Erfahrungen mit der kognitiv-emotionalen Verarbeitung
des Alterungsprozesses bei Menschen mit IM:
 Bei schweren Behinderungsgraden weniger starke kognitive Antizipation von Zukunft und weniger Reflexion von Vergangenheit,
 Verstärkung von körperlichen Beschwerden (v.a. frühkindliche Zerebralparese),
 Fortsetzung des Erlebens von Verlusten,
 In großen Institutionen der Behindertenhilfe:
Verlust von körperlicher Energie > Schonung durch Betreuungspersonal > Verlust der Stellung in der Hierarchie der Bewohner > starke Kränkung > Depression mit aggressivem Verhalten.
31
Checkliste: Demenz bei Menschen mit Down-Syndrom
(CDMD) C.Schanze 2009 modifiziert nach Whitwham 2003.
Veränderung innerhalb des letzten Jahres
In den Bereichen:
A
B
C
D
Gedächtnisfunktionen
0
1
2
3
Änderung des Affekts
0
1
2
3
Wahnhafte Störung
0
1
2
3
Verlust von Sprachkompetenz
0
1
2
3
Verlust praktischer Alltagsfähigkeiten
0
1
2
3
0
1
2
0
1
Allgemeine Verhaltensänderung
Erstmaliger cerebraler
Krampfanfall
nein = 0
ja = 2
Allgemeiner Hilfebedarf, HMB-Punkte aktuell: ……..
Differenz zum Vorjahr > + ; - ;
+> 10 HMB-Punkte = 1
(nur wenn 1-7 1Punkt oder mehr
Vergeben wurde)
Summe der Punktwerte >
Bei einem Summenwert = > 1 sollte
Eine Vorstellung bei einem Facharzt
Für Psychiatrie/ Nervenheilkunde/ Neurologie erfolgen!
32
Zusammenfassung:
Primäre Prävention durch:
 Empowerment,
 Angemessene Gestaltung des sozialen Umfeldes,
 Förderung (heil-/pädagogische) endet im Alter nicht, sondern erhält
andere Akzente,
 Adäquate medizinische Versorgung,
 Unterstützung zur erarbeitung individueller kognitiver, emotionaler,
sozialer und spiritueller Bewältigungsstrategien;
Sekundäre und tertiäre Prävention:
 Psychische Störungen im Alter bei Menschen mit geistiger Behinderung erkennen, verstehen und adäquat behandeln.
33
LEARNING DIFFICULTIES: AN INFORMATION
AND RESOURCE FILE FOR HOSPITAL STAFF
Unterlagen Dr. Carpenter, 2004
Contents:
Introduction.
What Is The Difference Between A Learning Difficulty And A Learning Disability?
What Is A Learning Difficulty?
How Might You Identify Someone With A Learning Difficulty?
Gathering Information On Admission To Hospital.
Carers.
Communication
Consent.
Difficulties Which May Affect A Person‟s Stay In Hospital:
• Difficult Behaviours
• The Anxious Patient
• Overcoming Anxiety
• An Aggressive Outburst
Discharge
PALS
Specific Syndromes:
Fragile X
Down‟s Syndrome
Prader-Willi
Phenylketonuria (PKU)
Tuberous-Sclerosis
Associated Conditions:
Autism
Aspergers
Cerebral Palsy
Epilepsy
Mental Health:
Schizophrenia
Mood Disorder
Anxiety Disorder
Dementia
Community Learning Difficulty Teams (CLDT‟s)
Contact Details For Local CLDT‟s
Bristol Intensive Support Team (BIRT)
Avon Forensic Team
34
Appendices:
Appendix 1: Further Reading
Appendix 2: Useful Contacts:
• Genetic Conditions
• Associated Conditions
• Carers
• Parents with Learning Difficulties
• Advocacy/Self Advocacy
• Disability Information
• Miscellaneous
Front of File Inserts
Communication Aids
Back of File Inserts
Referral Form For Bristol Community Learning Difficulty Teams
(Please Photocopy As Required)
Consent: A guide for people with learning disabilities
Acknowledgements
This resource file was compiled by Eileen Danford, Project Nurse for
People with Learning Difficulties with assistance from the Learning Difficulty staff of Bristol South and West PCT, the Speech and Language Therapists in particular Sue Howells, Tracy Cox, Lead Nurse, Bristol Intensive Response Team and Teresa Treasure, Community Learning Difficulty Nurse.
Thanks also to those people who commented on earlier drafts, Craig Jolly,
PALS Advocate, Carole Rainbow, Assistant Director of Nursing and Sue
Fyffe-Williams, Training and Development Officer.
Thanks also to the work of Craven, Harrogate and Rural District PCT who
compiled „The Hospital Patient with a Learning Disability‟, they allowed me
to use this as a source of information.
Introduction
In March 2001 the Department of Health produced the White Paper Valuing People – A New Strategy for the 21st Century. The White Paper sets
out the Governments commitment to improving the lives of people with
learning disabilities (difficulties) and its key health objective is:
„To enable people with learning disabilities to access a health service designed around their individual needs, with fast, convenient care delivered
to a consistently high standard and with additional support where necessary‟. (DOH. Valuing People Chapter 6 p59)
The White Paper outlines a number of expectations in relation to hospital
services in particular that
“Mainstream secondary health services must also be accessible for people
with learning disabilities. There must be no discrimination. Support will be
needed to help people with learning disabilities admitted to a general hos35
pital for medical or surgical treatment to help them to understand and cooperate in their treatment. The NHS will ensure that all its procedures
comply with the Disability Discrimination Act and that its staff recruitment
and training practices are also fully compliant”.
(DOH. Valuing People Chapter 6 p65)
It also places a responsibility on the specialist health services for people
with learning disabilities (difficulties) to support primary and secondary
health care providers. In particular that they will support people with
learning disabilities admitted to general hospital for medical or surgical
treatment to help them understand and co-operate in their treatment.
References:
Department of Health (March 2001) Valuing People: A New strategy for
Learning Disability for the 21st Century.
Craven, Harrogate & Rural District PCT - The Hospital Patient with a
Learning Disability.
What Is The Difference Between A Learning Difficulty And A Learning Disability?
Learning disability is the term used by the Government and is utilised
throughout all Government produced documents.
Learning difficulty is the term preferred by the Self-Advocacy movement
People First and is the term used by the local services to people with
learning difficulties in Bristol.
Learning difficulties is the term used within this document except where
quotes are taken directly from Government sources.
The two terms are often used interchangeably but it can be confusing as
„learning difficulty‟ is also a more general term used within education.
However people who have a specific educational difficulty do not generally
fit into the definitions given below.
What Is A Learning Disability/Difficulty?
A learning difficulty is a permanent condition. People with learning difficulties grow and develop as individuals, but at a slower pace.
Some people with learning difficulties may also have physical disabilities
or other medical conditions, but many do not.
Valuing People states that:
Learning disability includes the presence of:
• A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
• A reduced ability to cope independently (impaired social functioning);
• Which started before adulthood, with a lasting effect on development.
This definition encompasses people with a broad range of disabilities. The
presence of a low intelligence quotient, for example an IQ below 70, is
not, of itself, a sufficient reason for deciding whether an individual should
be provided with additional health and social care support. An assessment
36
of social functioning and communication skills should also be taken into
account when determining need. (DOH.2001 pp14-15)
A learning difficulty/disability is said to exist then if:
• The person has an intellectual disability developed before the age of 18
• The person has reduced ability to understand new or complex information.
• The person has reduced ability to cope independently.
• The person has difficulty or is unable to learn new skills
• The person has been assessed to have an I.Q. of less then 70
To clarify, the following people are not included in the accepted
definition of learning difficulty
• People who develop an intellectual disability after the age of 18 years.
• People who suffer brain injury in accidents after the age of 18 years.
• People with complex medical conditions which affect their intellectual
abilities and which develop after the age of 18 years – e.g., Huntington‟s
Chorea, Alzheimer‟s Disease.
• People who have some specific language or learning difficulties e.g., delayed speech and language development, dyslexia and those with literacy
problems.
References:
DOH (2001) Valuing People - A New Strategy for Learning Disability for the 21st Century
Craven, Harrogate & Rural District PCT -The Hospital Patient with a Learning Disability.
Elliott, K (2002) An Introduction to Learning Disabilities. (Unpublished)
Welsh, R. Moulster, G. Carter, C. Staples, S. ( 2001) Helping People with learning disabilities in primary and secondary care a resource package for health staff. West Hampshire
NHS Trust.
How Might You Identify That A Patient Has A Learning Difficulty?
It is not always easy to know whether a person has a learning difficulty or
not. Some conditions such as Down's Syndrome, Prada-Willi Syndrome
are easily recognisable and this will usually be recorded in their medical
notes. However, the majority of people with a learning difficulty do not
have a recognisable condition.
Some indicators that the person may have a learning difficulty
could be that:
They may have difficulty:
- Speaking
- Moving
- Understanding
- Reading and writing (however, illiteracy is not specific to people with
learning difficulties)
- Telling the time
- Remember their date of birth, age, address, telephone number
- Knowing the day of the week, where they are and who you are.
37
Ask if they have difficulty coping with:
- Shopping
- Money
- Getting around
- Personal care
- Health needs
- Taking tablets
They may:
- Also have physical disabilities, visual or hearing impairments (but most
people with physical disabilities do not have learning difficulties).
- Appear very eager to please or repeat what you say.
Ask:
- Where they live. Do they live in a group home, hostel, or as an adult still
live with parents?
- Where they work. Do they attend a special work scheme?
- Where they went to school. Was it a special school?
Ask if they
- Carry special identification.
- Have a social worker or key worker.
- Go to a Day Centre („ATC‟, „RAC‟).
- Get a disabled living allowance.
- Are a member of People First, Mencap, a Gateway club.
Ask
- Do you have help from anyone in the Community Learning Difficulty
Team?
- Do people say you have a learning disability or learning difficulty?
Reference:
Williams, C. (1995) Invisible Victims – Crime and Abuse Against Adults with Learning
Difficulties. Jessica Kingsley.
Gathering Information On Admission To Hospital
It is important to gather the right information on admission as patients
with learning difficulties often have additional difficulties with comprehension and communication. The current „Patient Assessment‟ form completed
by nurses on admission to a ward identifies the main areas of need to be
assessed, however when undertaking an assessment with a patient with
learning difficulties it is important to consider the additional factors:
Psychological:
Does the patient display any unusual behaviours, e.g. twiddling with clothing, pacing, restlessness, rituals, are there any triggers, how do carers
deal with these behaviours?
Nutrition/Hydration:
What does the patient eat/drink from, does he/she use aids, require assistance, special diet‟s likes and dislikes, have swallowing difficulties?
38
Mobility:
Does the patient use aids/ wheelchair/special seating, need help with
walking/use of stairs.
Hygiene/Skin Condition:
Does the patient need assistance with washing/bathing/dressing?
Rest/Sleep:
Does the patient need bed rails?
Is the patient able to call for assistance?
Will the patient wander during the night?
Does the patient need turning? If yes at what times?
In which position does the person sleep?
Is there any other special routine? i.e. lights on, special item/blanket.
Comfort/Pain:
Is the patient able to communicate pain? If so how?
Communication:
How does the patient communicate? Verbal, non-verbal, signs, gestures,
noises. What is the patient most likely to communicate about?
What are the personal interests and the meaning to the patient.
What is the best way staff can communicate with the patient?
Can the patient make his or her own needs known?
Is the patient able to call for assistance?
How does the patient react if something happens which he/she does not
like?
Eliminating:
Does the patient use continence aids?
Will the patient ask for the toilet, and do they need assistance?
Maintaining a safe environment.
Does the patient have a hearing impairment?
If yes do they use a hearing aid?
If yes but they don‟t use a hearing aid-from which side left or right is it
best to speak to them?
Does the patient have a visual impairment?
Do they wear glasses?
Does the patient need to use a hoist?
Are there any manual handling needs?
Is being in hospital likely to distress the patient? If so how will you manage this?
Will their lifestyle affect the treatment they are given?
Does the person have any conditions staff should be aware of, e.g. epilepsy, how is this condition cared for, triggers, emergency treatment, support
etc.
Does the patient wander?
Does the patient become upset with noise?
Gathering information can be time consuming but ultimately it may save a
lot time and distress. Remember that it is unlikely that the patient will be
39
able to provide all of this information. Where ever possible carers should
be involved in the assessment process before they leave the ward. Information may also be obtained from other professionals who know the patient well e.g. community learning difficulty nurses, social workers or other members of the Community Learning Difficulty Team.
When gathering information, you should always note who needs to be informed of a patient‟s progress. The carers of a person with learning difficulties may not be their next of kin.
A consistent approach is crucial. Ensure that all staff including non-nursing
staff are aware of the individual‟s needs. Important information relating to the day to day care of the patient should be recorded at
handover and where they are in use recorded on the computerised
handover sheet e.g. information relating to specific communication needs, hearing etc.
References:
Welsh, R. Moulster, G. Carter, C. Staples, S. (2001) Helping People with learning disabilities in primary and secondary care a resource package for health staff. West Hampshire
NHS Trust.
Linsey, M. Singh, K. Perrett, A. (1993) management of Learning Disability in the General
Hospital. British Journal of Hospital Medicine, Vol. 50/4, pp182-186.
Carers
For some people with learning difficulties, admission to hospital may be
their first experience of being away from their usual home environment or
being cared for by people who do not already know them.
Parents/carers experience of care provision will often be in a setting where
all staff know them well and also be familiar with the detailed needs of the
person with learning difficulties. Some information provided may seem
trivial or unnecessary to you but be considered vital by parents and carers.
Parents and carers know the patient well – It is important that
staff listen to them, their knowledge may help to support you in
the care that you provide.
Community Learning Difficulty Team staff also work with the parents/carers of people with learning difficulties and are familiar with the
problems that may arise they may be able to help with the liaison between ward, parents/carers and patient.
Communication
People with learning difficulties often have significant difficulties with
communication. These may be affected by feeling unwell, being in an unfamiliar environment and trying to understand new people talking about
„medical‟ information. This can lead to confusion, distress and possibly
poor co-operation or behaviours that are difficult to manage. Check with
someone who knows the person well (see list/questions). They may need
to be shown where the toilet/bath etc is rather than being told.
40
Give information in small chunks, and allow the person time to complete
the 1st part before continuing e.g.
• sit up, (wait …..)
• have a drink, (wait …)
Use basic vocabulary, i.e.
• 'heart‟ not „cardiac‟
• „doctor‟ not „SHO‟
Use positive instructions, i.e.
• „sit in the chair‟ rather than „don‟t sit on the bed‟.
Give plenty of time, and be prepared to repeat information more than
once.
Be prepared to demonstrate procedures (e.g. blood pressure) on self or
carer by way of explanation.
Check With the Carer/Person who knows the patient well e.g.
Community Nurse or other Professional
How to interact e.g. • Eye contact?
• Wait?
• Repeat?
How much does the person understand?
• Verbally?
• + Sign?
• Objects/pic
• Food
• Noise
• Touch
• Facial expressions
• Movement
• Noise
• Body movement/posture how to keep calm? e.g. • Quiet environment
• Music/TV/magazine how to indicate pain? e.g. • Objects?
• Pictures?
Speech and Language Therapists are based in the hospital they a will provide advice and support to patients with communication difficulties.
Consent
patient‟s consent must be obtained before they can be examined, treated
or adults are always assumed to be competent unless it has been proved
otherwise.
Adults with the capacity to take a particular decision are entitled to refuse
the egally the person does not have to sign a consent form to indicate
their consent.
41
An apparent lack of capacity to give or withhold consent may in fact be
the result to one (not even the person‟s parents, or others close to them)
can give consent on behalf of adults who are not capable of giving consent
for themselves.
care is given to them. An individual „consents‟ when they give their
agreement to a decision and its consequences.
In other words all adults over the age of 18 have the right to agree or disagree with something unless a doctor, psychiatrist or psychologist believes
that the person will not understand the reason behind their decision/choice.
treatment being offered, even if this will clearly be detrimental to their
health. The only exception to this is according to Part IV of the Mental
Health Act (1983) – Treatment without Consent and is limited to the
treatment of their mental illness.
Consent can be given orally or even non-verbally e.g. holding out an arm
to have their blood pressure taken or opening their mouth to have a dental check or pointing to an appropriate picture.
of communication difficulties rather than genuine incapacity. All appropriate colleagues should be involved in making assessments of incapacity,
such as professionals from the Learning Difficulty Teams. If at all possible
the person should be assisted to make and communicate their own decision, for example by providing information in non-verbal ways. Where
written consent is required the method of obtaining consent should be
recorded in the patients notes.
However they may be best place to advise on the patient‟s needs and preferences. If it is agreed that the patient cannot give consent then only a
doctor can decide hat is best for the person. No other adult can sign a
Consent Form on behalf of py of the Department of Health leaflet
Consent: A guide for people with
learning disabilities is filed at the back of this resource file- photocopy as the individual and Consent Form 4 must be completed. The doctor must always act in the best interest of the patient. Other professionals
such as nurses and outside agencies can provide support to the patient if
a second opinion is asked for
Difficulties Which May Affect A Person’s Stay In Hospital
Difficult Behaviours
It is a myth that all people with learning difficulties have problems with
their behaviour. If a patient with learning difficulties behaviour is causing
problems, the ause may be related to:
iss of being in hospital vironment unicate any of these fears adequately
be a sign that something is so try to find out what the cause is.
• The additional stre
• An increase in anxiety • Feeling unwell or in pain • Being in a strange en
• Changes in routine
42
• Being unable to commu
Difficult behaviour may wrong, hen responding to difficult behaviours remember to:• React in w
• Be non-confro
• Take a relaxed non-aggressive manner, both with stance and speech
and the nursing assessment documentation on the patient
The A e ente his may be even greater if the reasons
r them being there and what is happening to them are not explained in a
way days to diffuse tension intantional give personal space
• Use the information you have on how to communicate with
Anxious Patient
person with a learning difficulty will be at least as anxious as anyone else
who is ring such an unfamiliar environment. T fo they understand.
It could be assumed that a person with a learning difficulty is being difficult, awkward or acting dangerously, when in fact they are confused, apprehensive or lightened. Signs of anxiety are usually expressed as:nation and bowel actions express anxiety in different ways.
Find out from the carer, other community professionals or someone who
knows e person well what is normal behaviour for that person and record
and share helping the patient to understand that is happening and staff
being able to reassure them.
Difficulty Team, a team member can liase and share information with
ward staff before admission about:reduce the patient‟s anxiety.
sought as soon as is practicable from the carer and/or local Community
Learning Difficulty Team/Social Services.
• Hypertension • Restlessness and agitation
• Changes in appetite
• Frequency of uri
• Tearfulness ever people with learning difficulties may
this with all colleagues involved with that person. Overcoming Anxiety
The most effective way of reducing anxiety is by h
Pre-admission planning will help reduce anxiety in elective admissions. If a
patient is known too the local Community Learning D
• Expectations: the procedures and tests to be carried can be discussed
with the patient. • Patient‟s particular needs and ways to respond to
these.
• The team members may be able to liaise with parents/carers, which in
turn may help to
•
In the event of an emergency admission, more detailed information and
advice should be
43
An Aggress
As already s ng a learning difficulty; gressive if
frightened, upset or con nd communication may need to be:
• Simpler
For specific advice on individual patient needs you may want to consider
contacting the Bristol Intensive Support Team (BIRT) for advice/support.
Live Outburst tated aggressive behaviour is not a symptom of havialthough as with any individual, a patient could become agfused.
Respond as you would for any patient who becomes aggressive whilst remembering that a person who has a learning difficulty may have less understanding of the situation a
• Slower • Repeated
Discharge
Discharge arrangements for a patient with a learning difficulty should follow the
However, the local (i.e. local to the area that the patient lives) Community
Learning Difficulty Team may be able to:
• Offer specialist information when making discharge plans.
• Ensure the patient with a learning difficulty has understood and is following
discharge instruction including:
� Medication requirements and monitoring of compliance and side effects.
� Follow up appointments.
� Accessing other services such as practice nurse, GP and other therapists.
• Ensure that practical issues or difficulties are addressed and resolved
when necessary.
• Access other community services/workers who may be able to assist
patient/carers.
• Assist with the monitoring of a patient‟s progress following discharge
and provide feedback where appropriate.
Patient Advice And Liaison Service – PALS
“By 2002 a Patient Advocacy and Liaison Service (PALS) will be
a problem or need information while portant role for ensuring that people
with
• d providing information and support.
• ff and other organisations.
• laint.
• Linking you to other sources of information
Valuing People states that
44
established in every NHS Trust. Individuals will then have an identifiable
person they can turn to if they have they are using hospital and other NHS
services.
PALS will have an especially im
earning disabilities can access the full range of NHS provision.”
PALS can help by: Listening an
•Negotiating a quick resolution to problems. Liaising with sta
•Providing support and advocacy for more complex issues. Explaining how
you can make a comp
In addition each hospital has their own PALS Convenor. Contact details
can be obtained from the main reception area in each hospital. There is an
to „Easy to information leaflet available which may be useful to
atients/carers/parents with learning difficulties.
Specific Syndromes And Associated Conditions The extent of learning
difficulties varies from person to person ranging from mild learning difficulties to severe. For the majority of people the cause is unknown.
here are two main factors that cause learning difficulties these are:
• Genetic factors - where the person is born with a learning difficulty due
to a genetic abnormality.
• Environmental factors – where the learning difficulty may develop before, during or after birth e.g. due to lack of oxygen.
It is however vital to remember that each person is seen and respected as
an individual and as a person first regardless of the nature or extent of
their learning difficulty.
Affects girls and boys and shows itself in a wide range of difficulties with
learning and behaviour problems.
Learning disabilities vary from subtle educational delays to severe mental
andicap. The most striking feature of Fragile X is the challenging behaviour. typical Fragile X boy is inattentive, easily distracted, impulsive and
overactive. The girls are usually less affected than the boys but have similar attention difficulties. They are often extremely shy and socially withdrawn.a
Many have autistic-like features – a dislike of eye contact, difficulty in relating to their people, anxiety in social situations often leading to tantrums, insistence on ulties.
Phys a largish head and prominent ears but these are rarely that
and identify carriers of the syndrome.
a blood sample.
en and adults remain undiagnosed – a situation, which allow diagnosis.
the diagnosis so that appropriate medical, educational, psychological and
social help can be given.
Was a whole needs the diagnosis so that they and their relatives, who
45
ay be unknowing carriers of the syndrome, may be offered genetic counselling. many families a diagnosis is not made until after the birth of a
second or third familiar routines and hand flapping or hand biting. Speech
and language is usually delayed with continuing speech diffic ical features
include abvous in young children. It is because of this lack of obvious
physical features diagnosis is often missed or delayed.
The discovery of the Fragile X gene led to the development of reliable DNA
tests which will accurately diagnose those whose learning disabilities are
caused by Fragile X
These tests are usually done on
Many Fragile X childr
denies them access to the understanding and special care that, would fo
Children and adults need
Down's Syndrome is a genetic condition caused by extra genetic material (genes)
at we now as Down's syndrome. Individuals with Downs Syndrome also
have all the ning difficulty or cognitive disability and ther developmental
delays. Some of the physical traits that are common but not about 40% of
babies born with Down‟s Syndrome will have a heart problem.
Prader-Willi Syndrome
from the 21st chromosome. The extra genes cause certain characteristics
other genes given to them by their parents. As a result, they have a combination of features typical of Down's Syndrome on top of the individual
features from their parents. This includes some degree of lear always
present are epicanthal folds over the eyes, flattened bridge of the nose, a
single palmar crease and decreased muscle tone.
Some people may have cataracts and be prone higher risk of developing
dementia and at an earlier age than the general population.
Prader-Willi Syndrome (PWS) is a relatively recently identified genetic
condition (1956), not that the condition itself is new but the naming of it
and the recognizing of the characteristic symptoms and behaviours which
accompany it are, being first associated with eating problems, either the
person will have an increased
terest in food which is frequently linked to obesity or they may lose weight
due to wallowing problems. Health problems are often linked to diet.
People with PWS can become easily confused, anxious and upset. They
find it very difficult to change direction when they are set on a particular
path of thought or action, and they may exhibit their confusion, frustration
and anger which can present as behaviours that are difficult to manage.
Phenylketonuria (PKU) For Further Information Contact - National Society for Phenylketonuria (UK) Tel: 0845 6039136 Phenylketonuria (PKU)
46
is a genetic disorder which prevents the normal use of protein food. It is
said to occur in 1:10,000 births.
All new born babies are now tested for the condition soon after birth so
treatment can be started early. The food we eat contains protein, one part
of which (phenylalanine) cannot be broken down by the person with PKU.
Without treatment this leads to impaired
rain development but this can be prevented by using a controlled phenylalanine that high protein foods such as meat, fish, poultry,
Tuberous Sclerosis
Such a diet means cheese, eggs and cakes and bread made with ordinary
flour are not permitt
Tuberous sclerosis (TS), also known as tuberous sclerosis complex (TSC)
due a range of symptoms.
to the complexity of the condition, is difficult to explain because it affects
individuals in many different ways and with varying degrees of severity.
Some children and adults with TS remain largely unaffected and go
through life free from symptoms, whilst others who are less fortunate experience one or more of Tuberous sclerosis is a genetic disorder with
about one third of cases having been inherited from a parent. There is a
50% risk of someone with TS passing it on to any child they may have,
but only approximately one third of cases are thought to run in families,
with the remainder being sporadic cases.
Show ectrum disorder, including higher functioning autism or
oia and depression are commoner in adults. Sleep disturbance can also be
a problem and is usually associated with epilepsy.
Tuberous sclerosis derive which calcify with age and become hard or sclerotic. These lesions show up small white patches scan, but will be seen on
MR images the skin, eyes, heart, kidneys and lungs) but they may cause
little in the way of problems. Doctors find
Developmental Delay: Whilst 40-50% of people with TS have normal
intelligence, the remainder have learning and developmental problems
ranging from mild areas of difficulty to 25% with severe disabilities. Early
intervention is recommended.
Aspects of autistic
Asperger's Syndrome. Attention deficit and hyperactivity are often found
in children, and anxiety
Although commonly associated with general intellectual disabilities approximately 75% of people with autism have a non-verbal Intelligence
Quotie(IQ) below 70 - autism can also occur in individuals of normal, or
even superiointelligence. Because of the nature of the disorder (age of onset is not necessarthe same as age of diagnosis) true incidence is difficult
to determine. Prevalence studies however suggest that a conservative estimate is around 20-30 per 10,000
In common with many disorders associated with communication problems,
the male al nts, communication deficits and restricted and repetitive inter47
ests and behaviours although the manifestation of problems will be affected by if the wider spectrum is included. Although prevalence estimates
have increasesteadily over recent years, there is no strong evidence to
suggest a real rise incidence. Instead the rise is probably due to better
recognition of the condc to female ratio is about 4:1. All people with autism have difficulties in each of the three main areas; abnormsocial developme a intellectual level and, to some extent, age. Individuals of higher
intelligence armore likely to develop speech, show greater interest in social interactions, antend to be preoccupied with special interests, or collecting "facts" rather thaobjects.
Asperger Syndrome
Asperger syndrome is a form of autism, a disability that affects the way a
person communicates and relates to others. A number of the traits of autism are common saying a vivid imagination and great creativity with
teracy and art.
With Asperger syndrome often develop an almost obsessive interest in a
obby or collection. Usually their interest involves arranging or memorising
facts about a specialist subject, such as train timetables, Derby winners,
or the dimensions of cathedrals
to Asperger syndrome including: - >Difficulty in communicating - >Difficulty in social relationships - >A lack of imagination and creative play
However, people with Asperger syndrome usually have fewer problems
with language than those with autism, often speaking fluently though their
words can sometimes sound formal or stilted. People with Asperger syndrome often do not have the accompanying learning disabilities often associated with autism; in fact, people with Asperger syndrome are often of
average or above average intelligence with many displli
Because of this, many children with Asperger syndrome enter mainstream
school and with the right support and encouragement, can make good
progress and go on to further education and employment.
Cerebral Palsy. (Cp)
If someone has cerebral palsy it means that part of their brain is not
working properly or has not developed. This will have happened before
they were born, around the time of birth or in early childhood. The affected area of the brain is u ua ntrol the muscles and certain body movements.
In some people, cerebral palsy is barely noticeable. Others will be more
severely a ec ad a difficult or premature birth, maybe they were unable to
breathe properly. Cerebral palsy jumbles messages between the brain and
the muscles. There are bral palsy, depending on which messages are affected, called palsy a person has.
Cerebral palsy is more common than people realise. It is believed that
currently about one in every 400 children is affected by cp, i.e. about
48
1,800 babies are diagnosed with cerebral palsy in Great Britain each year.
It can affect people from all backgrounds. It is often not possible for doctors to give a reason why part of a baby‟s brain has been injured or failed
to develop. Some possible causes are: • The mother of the baby had an
infection in the early part of the pregnancy. • The baby h
• There could have been some bleeding within the baby‟s brain. • Or perhaps, and this is very rare, the baby has a genetic disorder.
three types of cere spastic, athetoid and ataxic. Many people with cerebral
palsy have a combination of two or more types. One of the difficult things
about cerebral palsy is that its effects vary so much from one person to
another making it difficult for doctors to say what type of cerebral p
Other difficulties and medical conditions may occur more commonly in
people with cerebral palsy does not mean that they difficulties.
• Children with cerebral palsy may have problems with constipation or
sleeping.
people with cerebral palsy may have difficulty distinguishing and
comparing shapes. This is to do with visual perception, this means ular
he I lly affected by cerebral palsy. Just because a person has
will also have these d
• People with cerebral palsy may have problems with speech, which are
associated with difficulties in chewing and swallowing, and problems understanding the spoken word. • Some people with cerebral palsy have epilepsy. Often medication can help control this. • Some
someone‟s ability to interpret what they have seen, not a problem with
their eyesight. • People with cerebral palsy may have learning difficulties, which means they are slow to learn. The difficulties can be mild,
moderate or severe. They may have a „specific learning difficulty‟ that is a
problem with a partic activity such as reading, drawing or arithmetic, because a specific part of t brain is affected.
It is important to remember that even someone severely physica
erbral palsy may have average or above average intelligence.
Epilepsy www.epilepsy.org.ukwww.epilepsynse-org.uk An epileptic
seizure (often called a fit and sometimes an attack, turn or blackout) happens when ordinary brain activity is suddenly disrupted. The seizures
escribed here are epileptic and arise from the brain
How can seizures be described? There are many different types of
seizures. Not all of them involve convulsions. When naming seizures it is
important to use terms which describe what is
A p nce more than one type of seizure. The f u person, although it may
change in the longer term. If a person becomes aware of and Partial seizures part
Pers bein
• seizures consciousness is not impaired. The seizure may
49
be confined to either rhythmical twitching of one limb or part of a limb, or
to other sorts of seizures and so they may be referred to as a 'warning'
or 'aura'. lex partial seizures differ from simple partial seizures in that
ffected and so the person may have limited or no memory seizures may
be characterised by a change in awareness as well as automatic
movements such as fiddling with clothes of the brain, in which case the
person may be said to have 'temporal lobe epilepsy', however they can
also affect the frontal, parietal and occipital lobes.
apening during the seizure and to avoid terms such as 'mild' or 'major'
which do ot describe the event. erson with epilepsy can experie
reqency, length and pattern of seizures tend to be fairly constant for each
ny changes to their seizures it may be helpful to have a review of their
epilepsy its treatment.
During partial seizures the disturbance in brain activity begins in or involves one of the brain. These seizures are sometimes known as 'focal'
seizures. A on's experiences during the seizure will depend on which part
of the brain is g affected. In simple partial unusual tastes or sensations
such as pins and needles in a specific part of the body. Simple partial seizures sometimes develop into
• Comp
consciousness is a of the seizure. The or objects, mumbling or making
chewing movements, or wandering about and general confusion. The person may respond if spoken to. Complex partial seizures most often involve
the temporal lobes
For some people either of these partial seizures may spread to involve the
whole of the brain. This is called a secondarily generalised seizure and
the person will lose consciousness. If this spread is rapid, the person may
not be aware of the partial seizure onset.
Generalised seizures In these seizures the whole of the brain is involved
and consciousness is lost. They often occur with no warning and the person will have no memory of the event. The seizure may take one of the
following forms: • The most recognised type of seizure is the generalised
tonic-clonic convulsive seizure, sometimes called a 'grand mal' seizure. In the first part the person becomes rigid and may fall. The muscles
then relaxed, have a headache and may need to rest to recover fully.
Sent risk of of the seizure and tighten rhythmically causing the person to
convulse. At the start of the seizure the person may bite their tongue or
cry out. Breathing may become laboured and they may be incontinent.
After the seizure the person may feel tired, confus
• In tonic seizures there is general stiffening of the muscles without
rhythmical jerking. The person may fall to the ground with consequent
risk of injury but generally recovery is quick. Atonic seizures, also
known as drop attacks. These involve a sudden loss of muscle tone, causing the person to fall. Again, there is consequ injury but recovery is generally rapid. Myoclonic seizures involve brief and abrupt jerking of one
50
or more limbs. These often happen within a short time of waking up, either on their own or with other forms of generalised seizure. Absence
seizures occur most commonly in children and are sometimes referred to
as 'petit mal'. The person experiences a brief interruption of consciousness
and becomes unresponsive. They may appear 'blank' or 'staring' usually
without any other features, except perhaps for a fluttering of the eyelids.
Absence seizures often last for only a couple of seconds and as izures.
These are called unclassifiable seizures.
they are subtle they may go unnoticed. Some seizure patterns may not fit
into any of the above categories or may include elements of different se
Status epilepticus
Most seizures last for the same amount of time for each person and usually stop of their own accord. However, in some circumstances seizures are
not self-limiting and do not stop, or one seizure occurs after another w
etween. This situation is known as status epilepticus. This can occur in any
type izure, however it is a medical emergency requiring medical intervention if it rs with a tonic-clonic seizure. tact Cardiac Arrest Team Tel:
2222 t to do when a seizure happens?
onvulsive seizuresures cannot be stopped or altered, so the best thing
to do is to follow these elines.
ng the seizure:Check the time to monitor how long th
may require emergency medical help Prevent others from crowding round
Put something soft under the person's he
prevent injury Only move the person if they are in a dangerous place, for
example at the top of a flight of stairs or in the road. Move things away
from them if there is a risk of injury.
• Do not put anything in the person's mouth. There is no danger of
them including necklaces. Unsitively as possible
• Stay with the person giving reassurance until they have fully recovered
at or drink until they are fully recovered.
to watch, but the person having the nd will have little or no memory of
what has happened.
of the seizure the person may cry out as the air from the lungs is expelled
through the voice box. During the early part of a seizure breathing may
n may go slightly blue. This looks alarming but is to be e etong
• injured themselves badly in a seizure
• ontinues for longer than usual (they may be carrying a
card which says how long their seizures usually last) or the seizure
Do not attempt to restrict or restrain the convulsive movements as this
may cause injury to the person or yourself swallowing their tongue during
a seizure and you may damage their teeth • Check that any tight clothing
around the neck is loosened,
Once the convulsions have stopped:• Roll the person onto their side
into the recovery position • Wipe away any excess saliva and if breath51
ing is still laboured, check that nothing is blocking the throat such as dentures or food • Do all you can to minimise any embarrassment. If the person has been incontinent deal with this as se
• Do not give the person anything to e Convulsive seizures can be frightening seizure is not in pain a
At the start stop and the person expected until normal breathing resumes
later on. The person may also bite their ue.
edical help should be called if: Someone has
• They have trouble breathing after a seizure One seizure immediately follows another without recovery in between The seizure c
lasts more than five minutes and you do not know how long they
usually last.
People with a learning difficulty can experience the full range of mental ill
health at affect the general population.
I e e is much higher. S parti they may not be able t o deal
he prevalence of Schizophrenia is at least 3 times that of the general population ing strange smells, taste and feelings.
• Lack of energy
• In people with learning difficulties aggression, self-injurious behavi tal Health th nded, research has shown that in some areas the prevalenc ometimes mental health problems are misdiagnosed as challenging
behaviour, cularly in people with severe learning difficulties where
o cmmunicate their feelings verbally. Always take this into consideration
when ing with 'difficult' behaviours.
Schizophrenia
(O'Hara, et al. 1997). Diagnosis is based on symptoms- • Hallucinations hearing unreal voices, seeing unreal people, experienc
• Delusions - paranoia, believe you are someone you are not. • Changes
in Behaviour – which can include sleep disturbance, fearfulness and withdrawal. Mood Dis
• Low mood, morbid thoughts
Changes in appetite, weight and sleep
Feelings of guilt
it can be associated with screaming, our and reduced communication.
Anx – Generalised Anxiety
Rapid pulse Dry mouth ss Tingling
Obsessive disorder
Stomach upsets Phobic reactions Panic attacks
Dementia There is a particularly high prevalence (15-45%) among
people in their 40s and 50s with Down's Syndrome.
References:
O'Hara, J. Sperlinger, Disabilities: A Practical Approach for Health Professionals. Chichester, John Wiley & Sons. sas, N. (1999) Mental Health and Learning Disabilities: Planning
and Sents. Editorial. Tizard Learning Disability Review, Vol. 4 (2) pp3-5.
52
The Community Learning Difficulty Teams
A CLDT is a group of specialist professional staff from Bristol South & West
ust and the local Social Services department, who provide support, advice
and therapeutic intervention to people who have learning difficulties.
o assist people, who have learning difficulties, to achieve their full potential and anjoy an integrated, varied and fulfilled life.
his includes help and advice now, and planning for the future.
ho Is In The Team?
� Psychologists
� Community Nurses
� Community Support Workers
� Psychiatrists
� Occupational Therapists
� Physiotherapists
� Speech and Language Therapists
� Social Workers (attached to the team to respond to referrals received
under the NHS & Community Care Act (1990) procedures)
above are supported by an administrator and secretaries.
What is a Co iculty Team
Primary Care Tr assessment, sle
Their Aim
The clinicians
In addition the team has access to the services of:
� Art Therapist
� Music Therapist
Who Does The Team Work With?
� Service users and their families
� Community Homes
� Voluntary Organisations colleges
All CLDT’s operate an open referral system.
How And Where To Contact The Learning Difficulty Services
� Drama Therapist
� Dietician � Challenging Behaviour Support Team � Forensic Service for
People with Learning Difficulties
� GPs and Health Centres � Health services including hospitals
� Social Services Hostels and Residential Units
� Resource and Activity Centres
� Adult Education C
� General public risol South & West PCT provide a community service to
support adults with ing difficulties living throughout Bristol. There are
south, north and central areas of the city.
CLDT‟s operate an open referral system meaning anyone can refer a person with a for assessment. (For further information about the work of
CLDT‟s see section on The Community Learning Difficulty Teams.)
To make a referral to CLDT‟s contact the team local to the patient‟s home
53
a r to refer to, the Administrator of any of t tol referral form can be und in
the Appendices, please photocopy this form.
Bristol Intensive Response Team (BIRT)
integrated Health and Social Services
Team, funded by Learning Disability Development Fund Monies, Bristol
City
Council and Bristol
The aim of the service is to develop a cent lence in improving the quality
of support to people with lities and their carers by supplementing existing
services in:
• s incl
• ons in response to crisis.
• Advising and supporting in the managem d mental health needs.
• All referrals will be made through Adult CLDT‟s or Children‟s Complex
Needs Team.
• Individuals may have mental health needs and /or display challenging
behaviour (emanating from various factors) which the professionals of the
CLDT/ Children‟s Complex Needs Team require additional input.
• Evidence of increased vulnerability as a result of mental illness or learning
difficulty/disability that cannot be addressed by the CLDT/Children‟s Complex
Needs Team.
• Evidence of increased vulnerability to self/others.
• Support is required within the person‟s home as the carers/providers
ability decreases because of his/her own personal circumstances9i.e illness) or increased complex needs presented by the service user.
Should receive it from the health and personal social services rather than
in the criminal Justice System. They should be cared for:
heForensic Service for people with learning disabilities is a new devel
hih provides a limited service in the following areas:
• Risk assessment and management Assessment of offendi
• Consultation
is the forensic service there for?
• Have been convicted of an offence Have allegations of offending made
against them Are considered „at risk‟ of offending
• Are victims of offences port can be provided for families and carers.
- With regard for the quality of care and proper attention to the needs of
ble, in the community, rather than in institutional settings
r conditions of no greater security than is justified by the degree of
sent to themselves and others as to maximise rehabilitation and their
chances of sustaining life
- As near as possible to their own homes or families if they have them.
hat clinical services are on offer?
54
The Team can provide advice on forensic issues pertaining to people with
learning lities such as The Mental Health Act (1983) and it‟s implementati
es such as the Police, Probation, So liaison personnel with these groups.
Dr Shamim Dinani Consultant Psychiatrist in Learning Disabilities ance
Leggett Forensic Clinical Psychol edy Goodman Forensic Senior Nurse
International
National Centre for Dh
Unit F9, 89/93 Font
London
N4 3JH
Tel: 0800 0184730
www.dppi.org.uk
www.supported-parenting.com
British Institute of Learning Disabilities
62 723010
d.org.uk
Campion House Green Street
Kidderminster
Worcestershire
Tel: 015
www.bil
Department of Health Web Sites
Valuing People
www.doh.gov.uk/vpst/home.htm Consent
www.doh.gov.uk/consent
Learning about Intellectual Disabilities and
Health
Web site providing information on Mental and
Physical Health, Diagnosis Families, Life
Stages, Complex Disability, Communication
MENCAP 123 Golde Norah Fry Research Centre
3 Priory Road
Bristol
BS8 1TX
Tel: 0117 923 8137
www.bris.ac.uk/Depts/Norahfry
Paradigm
(Consultancy, development and support)
8 Brandon Street
Birkenhead
CH41 5HN
el:0870 010 4933
www.paradigm-uk.or
55

archiv – LHÖ – medizin KRANKHEIT – ALTER

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