* 루이소체 치매에서 환각과 시지각 변화 관리하기 2021

Managing hallucinations and changes in visual perception in Lewy body dementia - YouTube

Managing hallucinations and changes in visual perception in Lewy body dementia

The Lewy Body Society 1.15K subscribers

12,821 views Jul 28, 2021

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This is a recording of a webinar that took place on 5th July 2021. It features Prof. John-Paul Taylor from Newcastle University and Rachel Thompson, Consultant Admiral Nurse at the Lewy Body Society. They discuss what causes hallucinations and changes to visual perception, and how to manage them with tips for people living with LBD and family members/carers.

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<루이소체 치매의 환각 및 시각적 인지 변화 관리> 요약 및 평론

1. 요약

본 문서(영국 루이소체 사회 주최 웨비나)는 노인정신의학 전문의 존폴 테일러(John-Paul Taylor) 교수와 어드미럴 간호사(Admiral Nurse) 레이첼 톰슨(Rachel Thompson)의 대담을 통해 루이소체 치매(LBD) 환자에게 나타나는 환각 및 시각적 인지 변화의 원인과 임상적·실용적 관리 방안을 다룬다.

• 시각적 환각의 역학과 특징

  • 발생 빈도 및 양상: 루이소체 치매 환자의 약 75%가 복합 시각 환각(Complex visual hallucinations)을 경험한다. 환시의 주된 주제는 사람, 아이, 동물 등 생물체(Biological theme)이며, 환각이 무서운 경우도 있지만 과거 친척을 보는 등 위안을 주는 경우도 존재한다.

  • 착시와 파라이돌리아: 환시 전 단계나 중간 단계로 옷을 사람으로 보거나 벽지 패턴, 나뭇잎 등에서 얼굴을 인지하는 착시(Illusion) 및 파라이돌리아(Pareidolia) 현상이 흔하게 나타난다.

  • 타 감각 환각과의 결합: 시각 외에도 청각, 촉각, 후각 환각이 결합되는 다감각 환각(Multimodal hallucinations)이 나타날 수 있으며, 이는 환자에게 더 큰 스트레스를 유발한다.

• 발생 기전 및 원인

  • 상향식/하향식 정보 처리 불균형: 시각 자극을 받아들이는 하향식 자극(Bottom-up)에 잡음이 생기면, 뇌의 내적 경험과 지식을 바탕으로 한 상향식 과정(Top-down)이 이를 과도하게 메우면서 환각이 발생한다.

  • 신경전달물질의 불균형: 아세틸콜린과 세로토닌의 부족, 혹은 파킨슨 증상 치료를 위한 도파민제 복용 등이 환각을 유발하거나 악화시키는 주요 원인이다.

  • 섬망(Delirium)의 개입: 요로 감염, 변비, 통증, 약물 부작용 등으로 급성 섬망이 발생하면 환각이 갑자기 심해지므로, 급격한 변화 시 섬망 여부를 가장 먼저 확인해야 한다.

• 치료 및 중재 방안

  • 약물적 접근: 아세틸콜린에스테라아제 억제제(리바스티그민, 도네페질 등)가 환각 조절에 가장 우선적으로 권장된다. 항정신병 약물(쿠에티아핀, 클로자핀 등)은 고도의 주의가 필요하며, 치명적인 부작용(근육 강직, 사망 위험 증가 등)이 있어 신중하게 사용해야 한다.

  • 비약물적·실용적 환경 관리:

    • 그림자나 어두운 조명을 줄이기 위해 실내 조명을 밝게 유지한다.

    • 환자의 경험을 무조건 부정하거나 정정하려 들기보다는, 불안감을 안심시키는 태도로 접근하고 다른 감각 자극(음악 감상, 촉각적 안정 등)을 활용해 주의를 전환한다.

    • 수면 장애(REM 수면 행동 장애) 및 피로가 환각을 악화시키므로 수면의 질을 개선하는 것이 필수적이다.

2. 평론

이 웨비나는 루이소체 치매 치료에서 가장 다루기 까다로운 증상인 <환각>에 대해 임상 의학적 근거와 현장 간호학적 실용성을 균형 있게 결합하여 제시한다.

첫째, 환각에 대한 신경과학적 해석을 통해 가해지는 죄책감과 공포를 완화한다. 환각을 단순한 정신병적 이상증세가 아니라, 뇌가 부족한 시각 정보를 메우기 위해 작동하는 신경학적 과정(Top-down processing의 과도화)으로 설명함으로써, 환자와 보호자가 증상을 객관적으로 이해하고 받아들일 수 있는 틀을 제공한다.

둘째, 치매 관리에서 <약물 과다 투여의 위험성>과 <환경 중재의 중요성>을 경고한다. 약물(특히 항정신병제)을 통한 완전한 증상 제거는 불가능에 가깝고 오히려 신체적 위험을 초래할 수 있으므로, 조명 조절, 섬망 체크, 감각 전환, 수면 관리 등 실생활에서의 환경적·비약물적 접근이 병행되어야 함을 설득력 있게 전달한다.

결론적으로, 이 자료는 증상의 완벽한 억제보다는 <환각으로 인한 환자의 불안과 스트레스 감소>, 그리고 <보호자의 돌봄 부담 경감>이라는 현실적이고 삶의 질 중심적인 치료 목표를 명확히 정립해 준다.

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『루이소체 치매에서 환각과 시지각 변화 관리하기』

<Managing hallucinations and changes in visual perception in Lewy body dementia> Lewy Body Society 웨비나, 2021 John-Paul Taylor 교수 · Rachel Thompson 간호사 

요약

이 자료의 가장 중요한 메시지는 의외로 간단하다.

<루이소체 치매의 환각을 반드시 없애야 하는 증상으로만 보지 말고, 그 환각이 환자에게 어떤 의미를 가지며 얼마나 괴로움을 주고 실제 생활을 방해하는지를 먼저 보라>는 것이다.

이 점에서 이 웨비나는 환각의 원인과 약물치료만 설명하는 의학 강의라기보다, 환자와 가족이 환각과 함께 어떻게 살아갈지를 다루는 실용적인 돌봄 강의에 가깝다.

1. 루이소체 치매의 환각은 매우 흔하지만 사람마다 다르다

John-Paul Taylor는 루이소체 치매 환자의 대략 4분의 3 정도가 복잡한 시각적 환각(complex visual hallucinations)을 경험한다고 설명한다. 흔히 보이는 것은 괴물이나 초현실적인 장면이라기보다 <사람, 아이, 동물, 고양이, 거미> 같은 일상적인 대상이다.

바로 이 평범함 때문에 환자가 그것을 실제라고 믿기 쉽다. 소파 위에 고양이가 앉아 있거나 집 안에 아이들이 있다고 보는 것은 현실 세계에서 충분히 일어날 법한 일이기 때문이다.

그리고 환각 자체보다 중요한 것은 <insight, 즉 그것이 실제인지 아닌지를 판단할 수 있는 능력>이다.

어떤 사람은

“또 보이네. 하지만 실제가 아니라는 것을 안다.”

고 생각할 수 있다. 이런 경우 환각은 별로 문제가 되지 않을 수도 있다. 반대로 똑같은 환각을 실제 침입자라고 믿으면 극심한 공포와 불안으로 이어진다.

따라서 의료진과 가족이 물어야 할 질문은 단순히

“환각이 있습니까?”

가 아니라

“그 환각 때문에 얼마나 불안합니까? 그것을 실제라고 생각합니까? 생활이 달라졌습니까?”

이다.

2. 환각에는 여러 단계와 형태가 있다

이 자료는 완전히 형성된 시각적 환각만 이야기하지 않는다.

예를 들어 벽지 무늬나 나뭇잎 속에서 얼굴을 보는 <pareidolia>, 옷걸이에 걸린 외투를 사람으로 보는 <illusion>, 누군가 뒤에 있는 것처럼 느끼는 <presence hallucination>, 시야 가장자리에서 쥐 같은 것이 재빨리 지나가는 듯 느끼는 <passage hallucination> 등이 있다.

그리고 환각은 시각에만 국한되지 않는다. 사람을 보면서 동시에 그 사람의 목소리를 듣기도 하고, 만지는 느낌이나 냄새까지 경험할 수도 있다. 이런 <multimodal hallucination>은 보다 복잡하고 스트레스가 큰 경우가 많다고 설명한다.

환각과 망상(delusion)도 구분한다. 환각은 실제 외부 자극이 없는데 감각 경험이 생기는 것이고, 망상은 사실과 다른 믿음이 고정되어 있는 것이다. 그러나 실제 생활에서는 두 가지가 결합되기 쉽다.

예컨대 낯선 사람을 보았다는 환각에서

“누군가 우리 집에 침입했다.”

는 망상이 만들어질 수 있다.

3. 왜 환각이 생기는가

Taylor가 설명하는 가장 흥미로운 부분은 <bottom-up과 top-down 처리>의 불균형이다.

눈에서 들어온 정보가 뇌의 시각영역으로 전달되는 것이 bottom-up 처리라면, 뇌가 이미 알고 있는 기억과 기대를 이용하여 그 정보를 해석하는 것이 top-down 처리다.

정상적인 뇌도 끊임없이 부족한 정보를 보충한다. 사람에게 있는 시야의 맹점을 우리가 느끼지 못하는 것도 뇌가 자동으로 빈 부분을 채우기 때문이다.

그런데 루이소체 치매에서는 외부에서 들어오는 시각 신호가 불완전하거나 ‘잡음’이 많아지고, 뇌가 빈 부분을 지나치게 적극적으로 채우면서 존재하지 않는 사람이나 동물을 만들어낼 수 있다는 것이다.

따라서 환각은 단순한 ‘상상’이 아니라 <지각과 해석 시스템 자체의 이상>으로 이해할 필요가 있다.

도파민, 아세틸콜린, 세로토닌 같은 신경전달물질도 관련되어 있고, 도파민성 약물이나 항콜린성 약물이 환각을 악화시킬 수 있다고 설명한다.

4. 치료에서 가장 먼저 해야 하는 일은 약을 더하는 것이 아니다

웨비나의 약물 부분에서 특히 중요한 것은 <기존 약물 검토>다.

파킨슨 증상을 치료하기 위한 도파민성 약물이 환각을 악화시킬 수 있고, 일부 방광약, tramadol 등 항콜린성 작용을 가진 약도 문제가 될 수 있으므로 새 약을 추가하기 전에 기존 약물 중 환각을 촉진하는 것이 없는지 살펴야 한다고 한다.

그 다음 중요한 약물이 cholinesterase inhibitor다. rivastigmine, donepezil, galantamine 등이 언급되며, 기억력과 주의력뿐 아니라 환각과 인지 변동에도 도움이 될 수 있다고 설명한다.

memantine도 언급하지만 당시에는 근거가 상대적으로 부족하다고 평가한다.

항정신병약은 훨씬 조심스럽게 다룬다. 루이소체 치매 환자는 이러한 약에 매우 민감할 수 있으며 파킨슨 증상 악화, 운동 둔화, 낙상, 혼돈, 졸림뿐 아니라 사망 및 뇌졸중 위험 증가까지 이야기한다.

따라서 이 자료는 항정신병약을

<환각이 있으므로 처방하는 약>으로 설명하지 않는다.

심각한 공포나 고정된 망상이 있고 삶의 질이 크게 손상되는 경우에 한하여 신중하게 사용하는 약으로 본다. quetiapine과 clozapine이 언급되지만, 특히 clozapine은 면밀한 관찰과 혈액검사가 필요한 약으로 설명한다.

5. 실생활에서 가장 유용한 부분 — ‘형사처럼 관찰하라’

Rachel Thompson의 설명 가운데 가장 실용적인 부분이다.

환각이 생기면 우선 <detective, 즉 형사처럼 원인을 추적하라>고 한다.

언제 생겼는가, 어느 방에서 생겼는가, 특정 물건과 관련되는가, 저녁에 많아지는가, 피곤할 때 증가하는가를 기록한다.

외투가 사람처럼 보인다면 외투를 옮긴다. 정원의 관목이 사람이나 동물처럼 보인다면 시야를 바꾼다. 어두울 때 심해진다면 조명을 밝힌다. 특히 해질녘처럼 명암이 변하는 시간에는 시각정보가 불분명해져 환각이 증가할 수 있다고 설명한다.

시력검사도 중요하다. 백내장이나 녹내장 등으로 시각 정보의 질이 떨어지면 환각에 기여할 가능성이 있기 때문이다.

6. 갑자기 환각이 심해졌다면 치매 진행부터 생각하지 말라

웨비나가 반복해서 강조하는 부분이다.

환각이 갑자기 크게 증가했거나 성격이 갑자기 달라졌다면 <delirium, 섬망>을 먼저 의심하라고 한다.

루이소체 치매 환자는 작은 신체 변화에도 매우 민감하다. 감염, 요로감염, 변비, 통증, 갑상선 이상 등의 비교적 사소해 보이는 문제가 심한 혼돈과 환각 증가를 일으킬 수 있다.

따라서 며칠 사이 갑자기 환각이 심해졌다면

“치매가 갑자기 악화되었다.”고 결론내리기보다 

치료 가능한 신체적 원인이 있는지 의료진에게 확인해야 한다는 것이다.

이것은 이 13쪽 자료 전체에서 가장 실제적인 임상 조언 가운데 하나다.

7. 환각을 부정하거나 논쟁하는 것이 반드시 좋은 방법은 아니다

가족은 본능적으로

“아무도 없어.”

“그것은 사실이 아니야.”

라고 말하고 싶어진다.

그러나 Thompson은 이것이 항상 효과적이지 않다고 지적한다. 환자가 완전히 실제라고 느끼고 있을 때 가족이 계속 부정하면 오히려

“내 말을 믿어주지 않는다.”

는 불안이 커질 수 있다.

그 대신

“무엇이 보이는지 이야기해 주세요.”

라고 묻고, 환자가 얼마나 불안해하는지를 알아보는 방법을 권한다.

환각 내용 자체를 사실이라고 인정할 필요는 없다. 그러나 <그 사람이 실제로 그것을 보고 있고 그 때문에 느끼는 감정>은 인정할 수 있다.

때로는 음악을 듣게 하거나, 이야기를 나누거나, 다른 방으로 이동하거나, 청각이나 촉각 등 <다른 감각으로 주의를 돌리는 것>도 도움이 된다.

상황이 심하면 다른 가족이나 이웃이 와서 대화를 시작하는 것만으로도 환각에 몰입되어 있는 순환을 끊을 수 있다고 한다.

8. 목표는 ‘환각 제로’가 아닐 수도 있다

웨비나 후반부에서 Taylor가 아주 중요한 말을 한다.

치료가 성공했다고 해서 반드시 환각이 완전히 없어지는 것은 아니다.

환자가

“아직 보이기는 하지만 전처럼 무섭지 않다.”

고 말하게 만드는 것만으로도 상당한 치료 성과일 수 있다는 것이다.

이 관점은 상당히 중요하다.

환각을 질병의 객관적 증상 숫자로만 평가하지 않고 <환자의 삶의 질과 고통>을 중심에 놓는다. 하루 다섯 번 보이던 환각이 하루 한 번으로 줄어드는 것보다, 여전히 다섯 번 보이지만 더 이상 두려워하지 않고 일상생활을 계속할 수 있게 되는 것이 더 중요한 변화일 수도 있다.

---

평론

이 웨비나의 가장 큰 장점은 <의학적 설명과 돌봄의 현실을 아주 잘 연결한다는 점>이다.

특히 정신과 의사 Taylor와 치매 전문 간호사 Thompson의 역할 분담이 좋다. Taylor는 신경전달물질, top-down/bottom-up 지각, 약물, 연구를 설명하고, Thompson은 가족이 실제 거실에서 무엇을 해야 하는지를 이야기한다.

두 사람의 설명을 합치면 하나의 일관된 원칙이 나온다.

<환각을 대상으로 싸우지 말고, 환각을 경험하고 있는 사람을 돌보라.>

이것이 이 자료에서 가장 중요한 통찰이라고 본다.

특히 <insight의 정도를 먼저 파악하라>는 주장은 매우 중요하다. 같은 시각 환각이라도 “실제가 아니라는 것을 안다”고 생각하는 환자와 “실제 침입자가 있다”고 확신하는 환자는 전혀 다른 치료 문제다. 단순히 ‘환각 있음/없음’을 기록하는 것으로는 이 차이를 잡을 수 없다.

두 번째 장점은 <비약물적 대처를 약물보다 열등한 방법으로 취급하지 않는 것>이다. 조명, 피로, 수면, 시력, 사물의 배치, 대화 방식 등이 모두 치료의 일부다. 이것은 환각을 단지 뇌 속 화학물질의 문제로 환원하지 않고 사람-환경 관계의 문제로 본다는 점에서 매우 설득력이 있다.

세 번째로 뛰어난 부분은 <섬망>에 대한 강조다. 루이소체 치매에서는 감염이나 변비처럼 사소해 보이는 문제가 환각을 폭발적으로 증가시킬 수 있으므로 갑작스러운 변화에는 원인을 찾아야 한다는 원칙을 반복한다. 이것은 보호자가 반드시 기억할 가치가 있다.

반면 한계도 분명하다.

첫째, 이것은 체계적 임상지침이나 논문이 아니라 2021년 웨비나다. 약물마다 연구 근거의 수준을 체계적으로 비교하지 않고, 임상 경험과 연구 결과가 섞여 있다. 특히 pimavanserin, ondansetron, memantine, 뇌자극 치료 등 ‘앞으로의 가능성’에 관한 부분은 <2021년 당시의 전망>으로 읽어야 한다. 현재 치료 상황을 판단하는 자료로 그대로 사용하기에는 시간이 지났다.

둘째, 어떤 방법이 어떤 환자에게 얼마나 효과적인지를 정량적으로 제시하지 않는다. 예를 들어 조명을 밝히거나 음악을 듣는 것이 도움이 될 수 있다고 하지만 효과 크기를 보여주는 근거는 거의 제시하지 않는다. 실제로 Taylor 자신도 이런 비약물적 방법에 대한 연구가 부족하다고 인정한다.

셋째, 원본이 YouTube 자동 자막을 옮긴 자료라 약 이름과 전문용어에 여러 전사 오류가 있다. 따라서 정확한 약물명이나 용량을 확인하기 위한 자료로 사용해서는 안 된다.

그럼에도 이 자료는 <환각을 어떻게 이해해야 하는가>라는 점에서는 매우 좋은 교육자료다.

가장 기억할 만한 내용을 한 문장으로 압축한다면 다음과 같다.

<루이소체 치매의 환각 관리에서 중요한 것은 ‘보이는 것을 없애는 것’이 아니라, 왜 그것이 나타났는지 살피고, 환자가 그것을 어떻게 받아들이는지 이해하며, 공포와 생활 장애를 줄여주는 것이다.>

바로 이 때문에 이 웨비나는 단순한 ‘환각 치료법’보다 한 단계 깊은 자료라고 평가할 수 있다. 환각을 환자의 잘못된 현실로 보지 않고, <변화된 뇌가 세계를 경험하는 하나의 방식>으로 이해하도록 가족의 시선을 바꾸기 때문이다.

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Transcript

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okay good morning everybody my name is Jacqui Cannon from the Lewy Body Society
and thank you for joining our webinar this morning on the very important subject of hallucinations
we're very privileged to welcome with us this morning two experts on that subject
professor John-Paul Taylor from Newcastle university and Rachel Thompson who is a consultant
admiral nurse working from dementia UK and funded by the Lewy Body Society so I’d just like to
give them the opportunity to introduce themselves before we go into our session so
John-Paul yeah thanks very much for that introduction so my name is John-Paul Taylor I’m
an old age psychiatrist and a doctor based in Newcastle I’ve got a specialist interest in
Lewy body dementia and see people clinically in that fashion I also do a lot of research
into the field of Lewy body dementia and visual hallucinations is one of the areas that I look
at and try to I suppose understand the causes of visual hallucinations and how to treat them better
thank you John-Paul Rachel hi thanks Jacqui I’m Rachel Thompson I’m currently working as
a consultant animal nurse I’ve worked in dementia care gosh for over 20 years now and been a nurse
for a lot longer than that but I have worked with supporting families who are affected by dementia
in my role as an admiral nurse and over the last nearly two years now I’ve been working with the low Body Society just specialising in the particular difficulties that families who are
affected by Lewy body dementia are faced with and I’m delighted we're doing this topic today because
I have to say I still get lots of queries lots of families really struggle with hallucinations
and so hopefully we can try and unpick and have some conversations about some of the things that
we think from our experience might help people thank you thank you Rachel so we'll go straight
into this very important topic John-Paul can you tell us about visual hallucinations in dementia
with Lewy bodies and are they common yeah so they are common I mean again it depends on
what populations we're looking at but probably is a rough estimate about three quarters of people who have got a living body dementia will experience complex visual hallucinations
and what we mean by that is essentially seeing things which are not there that's the essence of
hallucinations and often what people will see is often what we call of a biological theme so that
means seeing animals children people typically and you know again a very sort of common story and I’m
sure Rachel sort of also described this as this perhaps you know you might hear of mum leaving
food out on the table for visiting children or food out for cats which are coming into the house
and you know these can be really sort of very vivid experiences for people and they're you know they often can be associated as well with other symptoms such as the delusion
so that sort of fixed beliefs that people have which aren't necessarily true so they
might believe that there's an intruder in the house they might get anxious they might get agitated they might get distressed a lot of other people get some degree of comfort from
these sort of experiences for example seeing you know a dead relative you know present it makes
them feel you know a little bit more reassured and sometimes actually the challenge is not so much for the person living with everybody dementia but actually for the family members
having to deal with it and I think that you know again what we tend to see is that a lot of the
hallucinations aren't of the what I would call fantastical theme they're not of like you know
I suppose giants and dragons and weird and wonderful things they're often quite sort of
I suppose boring in a day-to-day way you know you might have you know the cat sitting on the sofa
you might have you know spiders coming down the wall you know nothing dramatic it often fits
within the normal day-to-day life of people that they sort of experience these things so that's why
in a way it's sometimes going to be challenging for people to say is this real or is this not real
because it's actually quite normal as it were and I think again you know these phenomena can vary
from person to person sometimes some people will get very minimal maybe very occasionally then they might experience them and then others will experience them virtually all of the time some
people will get them more at certain points of the day for example in the evening time or night time or perhaps only in one setting I mean typically people again might experience it
more in the home than out and about because often hallucinations come in the more I suppose familiar
settings that people experience and again what the sort of range is I’ve talked about the sort
of complex visualizations but some people will experience some more some sort of intermediate or
subtle symptoms and these can sometimes actually happen before the hallucinations appear and these
are things such as illusions or paradolia is now we we've all experienced paradolia's that's when
you know we look up the clouds and we might sort of see a face in the clouds and people with levy
body dementia might have more vivid paradox so they might look at a bush or a patent wallpaper
and then say oh I can see a face there which is coming out so that's not this quite the same as
a fully formed hallucination which is sort of pops into existence and so there's a sort of a broader
not just the visual hallucinations but there's a sort of a broader range of visual experiences that
people can have which are sometimes in themselves quite troublesome and difficult to manage
and then I suppose the final point I’d just like to say is that we're talking about complex visual hallucinations here but we know that some people with low body dementia
also experience hallucinations in other sensory domains so for example hearing voices or sounds
feeling something touching their skin smelling something tasting something and sometimes these
can go with the hallucinations so you can really build up sorry the visual hallucination so you can really build up this I suppose world of strange experiences and you know the final I suppose point
I would want to make is that you know insight this is sort of knowing that whether it's real or not real can vary from person to person from time to time so that does make the overall phenomena and
the symptom quite hard to manage sometimes so I think that's hopefully that's a sort of a a rough
overview of complex visual hallucinations and Lewy body dementia thank you John-Paul and I should
have said if participants for today's webinar if you have any questions for our panellists
if you could put them in the Q&A box and we will try to answer as many as possible at the end
Rachel what impact does visual hallucinations have on people with DLB and their families
gosh that's a really important question Jacqui so I think my first answer is it varies
from person to person from family to family so for some people as John-Paul was saying
actually if the hallucination feels kind of fairly normal it might be that the impact isn't huge so
it might be as you say if somebody's seeing something that offers them some comfort then
it might be actually the person who's experiencing these might not even say something to their family
member and often one of the things that we say on assessment is and I’ve heard families say when
you know a nurse or a doctor has asked them a question along the lines of do you ever see
things that you're not sure if they're real or not or do you think your eyes play tricks on you
people will admit to seeing things and their family member perhaps even a spouse husband and wife who lives with them may not even be aware that was happening so I guess that's the
first important thing is how much what kind of impact is it having on somebody and finding out
is it something that is persistent is it something that just happens kind of occasionally
and how distressing is it sometimes as as John-Paul was saying is these hallucinations
may not be that upsetting or distressing but may start over time and start interfering with
what that person's able to do so families may say things like the person's perhaps
not eating so much so I’ve worked with families where somebody's been leaving
food out for children who were being seen and then weren't eating themselves because the food
wasn't being eaten so they were so preoccupied or it might be somebody stops going outside because
they're seeing somebody outside and it's becoming a little bit frightening perhaps I feel that
they're starting to be watched it might be that if there's a hallucinations appearing in a specific
room for example the person may stop going into that room so if that's starting to happen then
of course as a family member or you know your person yourself is that it's starting to impact on the way that you live your life there are some hallucinations that can be very frightening
and very distressing and these are particularly difficult I think and maybe that if that person
is stopping doing something as a result or starting to accuse other people
of perhaps you know getting going behind the back or not believing them
that can be a real source of conflict and distress so I think the impact really does vary
I think we'll go on to talk about some practical steps but I think the first thing is trying to think as a either person yourself or with the condition or a family member how fixed is it
does that person have enough insight to be able to have a conversation about oh do you
think this is real or not and then that's a good starting point to work out well how do you respond
and how much help do you need I think John-Paul is going to go on to talk about treatments so
I'll leave him to talk about that but I think if you if anybody's noticing any odd behaviour
somebody's acting a bit suspiciously or you're worried yourself that things you're saying things you're not convinced they are real or not then my recommendation is always just seek advice
talk to somebody because people often don't admit it because you know you might kind of feel a bit silly you know am I seeing I’m you know what's going on so giving people the space and the
opportunity to say I’m a little bit worried about this it's a just a really important starting point
I think that's probably thank you Rachel John-Paul do we know what the causes are of visual
hallucinations in DLB and if you're starting getting visual hallucinations what does this mean
okay I think that's a really good question and it's actually a very difficult question to address
I think one of the sort of early things that people notice is that they notice that I suppose
certain medications can cause hallucinations and I think the obvious ones is people with Parkinson’s
disease they go on medications to help with the Parkinson’s disease and as a result of
that then start experiencing hallucinations and then the medications get reduced a bit and the
hallucinations improve so we do know that some of the dopaminergic medications can really predispose
people towards to visualize nations and also we know that some other drugs called anticholinergics
can affect people's thinking ability can also cause hallucinations and so I think medications do
have a potential role for perhaps tipping people into you know a visual hallucinatory state as it
were but we know that there's something intrinsic as well about having Lewy body dementia which
predisposes you towards hallucinations generally so perhaps the medications are just giving that
little bit of a push into experiencing these phenomena and we know that the hallucinations can
occur early on even before people start getting more memory problems or dementia and I think the
other thing is that we know that you know these hallucinations are part of a broader
sort of visual symptom problem people sort of experience in these illusions and paradolia's and
some people also getting phenomena of what we call presence and passage and you know I’m sure some of
the listeners who have got who've got relatives who've got or are living with Parkinson’s disease
will have experienced this where they might feel as though there's somebody behind them a feeling of presence or they might get a passage hallucination which is these sort of very subtle
fast-moving things across their eyes they often describe like mice running across the ground
and these sort of things can occur before the more obvious complex visual hallucinations now
we think a lot of these systems are interlinked but some of them are separate in terms of what's going on in the brain and as I say there's a lot of research going on at the moment to
try and unpick these things and I suppose the view is that a lot of it is how we actually
see and interpret the world around us versus our internal world and we use phrases such as
top-down processing and bottom-up processing so what I mean by bottom-up processing is
things coming in from your eye all the visual information going to the back of the head where your sort of visual part of your brain sits getting processed getting on pick getting
sort of re-put together working out that that's got four legs that's got a top that's a table
and then top down what we know about the world that we know that things with four legs and a
top that's probably likely to be a table and so there's a bit of interaction about where we are
of what our brain is sort of knows about the world around us and what signal is coming in and we
think I suppose that we are having a situation where perhaps some of the signal coming in
is a bit noisy and then what happens is that the brain is filling in the gaps so that is in
a way quite normal that's what everybody's brain does and the actual fact the brain is an amazing
sort of machine in this fashion you know a lot of it information we aren't even realizing is getting filled in we have a bit in the in our vision called the blind spot and you don't notice
the blind spot but there is a bit of your vision you don't actually have but your brains already filling that in automatically so it is amazing in that fashion but it probably just tips into
sort of a slightly abnormal state and you know a lot of my colleagues are sort of thinking that you
know maybe you know it's better in a way to have as we call it a false positive so better to see
what you think is a lion in the bushes then not see the lion because that's evolutionary to our
advantage to sort of get a little bit oh is there something there is or not so that might
be part of the reason why we can experience these phenomena and of your brain is slightly adjusted
you're more likely to experience these phenomena and that might come down to different excitability
levels in different parts of the brain it might come down to different connections between the visual part of the brain and the other part of the brain so this top down bit so perhaps
we're thinking the top-down bit the internal world that we have and the is a bit too much
as it were and it takes over from what is actually the external perception the bottom-up perception
and that's why the hallucinations manifest there's probably also chemical imbalances we know that key
chemicals in the in the brain are altered in the body dimension I’ve already mentioned
dopamine if we give a bit too much dopamine that might cause problems acetylcholine seems
to be particularly important and as I'll come on to talk later acetylcholine is one of those
chemicals in the brain we try and boost with the cholinesterase inhibitors and there's also another system called the serotonergic system and again that's probably quite important and we know that
you know for example lsd which is a drug that people take and actually that's associated with
the serotonergic system that causes people to have very vivid hallucinations so imbalances in these
systems are very important and probably that's why these are our potential targets for when
we you know drugs that we give now and potential future treatments so I probably danced around this
sort of well what's the causes of hallucinations I think the bottom line is we've got a couple of
different theories and models and things like that and we're doing a lot of research in this space
but you know actually pinning it down specifically still is you know is unclear at the moment and we
need to do a lot more work to really understand that so lots of ideas at the moment but no clear
conclusions I’m afraid thank you thank you John-Paul one question that we get asked quite
frequently at the charity is what medications can be used to treat these visual hallucinations
yeah so I think I mean and Rachel may speak to the sort of the known medicine root the
non-pharmacological route because I think that's also very important and I think that you know
there is a lot of medications which we sort of try I think that as I’ve said cholinesters
inhibitors is probably one of the first line treatments that we use in liver body dementia now that helps with attention helps with memory but also probably helps with visual hallucinations
and cognitive fluctuations so all of those things together so it seems to be beneficial more broadly and we know that certainly that the boosting the cholinergic system
seems to help some patients and it's probably the most amount of evidence that we've got is for
those drugs so that's things such as rivastigmine dinepisal glantamine which are used in that sense
but that doesn't sort of treat everybody I think then the other options we've got to think is
what else I think one of the probably sort of taking a step back is we also look at what
medications people are taking to begin with and you know as I say if somebody's on
lots of dopaminergic medications to treat their Parkinson’s symptoms we have to think
well can we reduce some of those a little to actually reduce these hallucinations are
they on any other medications which might have what we call anticholinergic effect
and we know that some drugs such as tramadol some of the bladder drugs can really cause big
problems so can we reduce or stop those or substitute something else instead
then in terms of sort of the other options I think that we think about things such as mementine
this is another drug which is used to treat sort of thinking abilities and improving them we haven't got as much evidence unfortunately for me mounting in living body dementia that
we're about to start a trial to really understand does this this medication help I think the other
options then we move into looking at things such as the antipsychotics now the antipsychotics are
I’m you know a drug class that we are quite wary about using in Lewy body dementia and
that's because people with low body dementia can experience really quite marked side effects
from those types of medications it might make them more have more Parkinson’s symptoms more slowed in
their movements more prone to falls more confused more sedated and also there's an increased risk of
general mortality if I’m being very honest with those drugs and also more broadly an increased
risk of stroke as well so we have to use them with a very high degree of caution but I have
to say in a subgroup of people they can be very effective particularly at low dose and we can come
on to discuss the nuances of what sort of people might benefit from them but unfortunately again
the drug trials out there to say what's a great drug you know what's the best antipsychotic to use is really not out there at the moment I mean I'll talk about some future directions in a minute
on what we might be looking at so we've got a range of options but none you know we
often and I think as Rachel's just highlighted each person's an individual sometimes we try one
thing doesn't work we try another thing that might work something which might not work at the start might be something we might try later on and vice versa so the one thing about Lewy body dementia is
that people really do change over time and each person that comes in is completely different from
every other person so we have to sort of sometimes suck it and see with some of their approaches
that's great thank you very much Rachel are there any practical steps and approaches that can be used to deal with visual hallucinations
ah so practical steps this is the thing that families you know in that moment when you are
looking after somebody or you are experiencing these sensations yourself you need practical
steps and this is as probably as you've indicated Jacqui people are just looking aren't they for
how do I manage this this is very distressing it's disrupting our daily life and it's very worrying
the first thing I would say it's often a little bit like you have to be a bit of a detective and I think when as professionals sometimes we will be asking questions of families to find out a
little bit more about what's happened around the person starting to experience so as I said
previously the starting point is trying to find out how much insight does somebody have so if you
can still often particularly in earlier kind of phases of Lewy body dementia people do still
have quite a lot of insight so you can often say to people things like do you think your
eyes are playing tricks on you if the person is aware that they've got this condition then you can talk about it it's the condition that's making their brain kind of trick them in a way
but in terms of what to do I would always my starting point would be to almost to start making
a little note of what's happening so making a record of when somebody's seeing something
what time of day it is thinking about what we call triggers so is there something that's perhaps
somebody is seeing that they're misperceiving and John-Paul was talking very much about that
how our brain interprets things and sometimes gets it wrong and sometimes we find this for
people with lower body so a good example is you know somebody may see a coat hanging on a you know
the back of the door and they may look at that and think that's a person or it might be a bush that's
outside in the garden may be seen as something that's perhaps an animal or again people standing
outside so I think practically thinking through what's the situation it happens are there any
triggers that you can change so if you're noticing that somebody's always looking in a certain place
have a look and think is there something that can change about their environment sometimes think things like thinking about the time of day can be really important what seems
to happen and actually this happens a little bit in other types of dementia anyway is that
as the day goes on people often get more tired and when we're more tired our brain perhaps
isn't functioning quite so well and that's when sometimes we see things like the changing of light
particularly this kind of dusk period when the light is changing people are perhaps more likely
to see things that maybe are not there but also they're more tired as well so they're more likely
to perhaps get more distressed as a result so thinking about the lighting can help so maybe
can you improve the lighting there was this fashion wasn't that we're all getting all these
low light bulbs because they're energy-saving for people with visual problems this is not great to be honest with you so I think you know increase the lighting think about things like
you know if somebody is repeating something actually that's what I was going to say
it's something if something's recurrent it's probably is likely to be hallucination because
we find hallucinations have to have themes so it will be see people see similar things and it happens repeatedly I would always think about is this there's something else causing it so again
back to being a detective what we're always alerted to is there another possible cause so
delirium is an expression we use which is cause things like infections constipation
pain sometimes thyroid deficiencies these can lead to what we call a delirium where people can get
very confused and hallucinations or seeing things that aren't there isn't is also a common feature
of delirium but it's often a little bit different so people who hallucinate things it's less likely
to be a theme it's probably a little bit more chaotic and less repetitive so if
you see a sudden change in somebody particularly hallucination I would say we have this phrase we
say think delirium think about is there something else that could be causing it because if you can
get delirium can be treated you know somebody can be given antibiotics they'd become given perhaps
painkillers if they're in a lot of pain if they could have a thyroid deficiency kind of you know
sorted out so think about that first I think the difficult ones that families often talk
to me about is when somebody won't be shifted in there they're seeing something they're convinced
it's there and as a family member our instinct I think is to try and persuade somebody it's okay
it's not there you know you're seeing things now that can work sometimes if people feel reassured
but sometimes it can have the opposite effect that people may kind of say you know get more
distressed and so a lot of my work when I’m kind of supporting families is trying to think through
what are the things that you can do to respond that will reassure that person and what we often say is challenging the hallucination isn't always the best approach
because if that person really thinks it's there and they don't think you're believing them then
then you're going to find it harder to support them so perhaps you know just talking get them
to talk about it tell ask them more about it what is it they're seeing you might actually through
doing that be able to help them see well actually maybe it isn't real if it persists then sometimes
just going along with it may be the best way and I’m finding a way to distract somebody from it now
again not always possible if somebody's extremely distressed sometimes just by if you're in a room
with somebody and they're getting very distressed and they're very frightened sitting with them perhaps engaging with a different sense so for example if somebody's seeing something and this is
what seems to work with people who have hallucinations with other conditions such as psychosis or schizophrenia is that getting them to use a different sense sometimes can work so if
somebody's seeing something using their kind of auditory so listening to a piece of music
having something that will distract them and use a different sense sometimes can be reassuring
I think if somebody's at risk or you're very concerned then you know safety is clearly very important so thinking and actually family sometimes say by somebody else
sometimes they maybe call a neighbour or a family member just to come in to talk to the person
that can kind of break the cycle it can take that person away from the distress they're experiencing
if you are worried that person is going to harm themselves or you then obviously call in other
services but I think as John-Paul was saying is we yes the strategies are really important
but it is this balance between how we respond to what we call psychosocial type approaches
but also thinking about is there a treatment that may actually reduce some of that distress and take
a take away some of the edge off the hallucination it may not take them away completely but in my
experience sometimes particularly things like rivastigmine if it's effective can make that
hallucination just much more manageable and people will say things like well I still see it but hey yeah it's all right I don't mind it's just there isn't it I’m sure there's lots more
that will come out when we get to our Q&A but that's probably enough for me for the moment
thank you thanks Rachel and finally for this part of the session John-Paul looking forward were is
research going with visual hallucinations and will there be any new treatments for this major symptom
yeah again very good question I mean I'll just actually before moving on to that just re-emphasize I think Rachel's point about delirium you know we know that people with Lewy
body dementia are very sensitive to developing delirium so it only requires something very minor
you know a bit of pain constipation you know a mild urinary tract infection and that really can
tip somebody right across on you know so I think that you know if you notice that you know somebody
is sort of experiencing much more hallucinations and it's you know real quite sharp change from
where they were before I think then you know that should ring the alarm bells is there an underlying delirium which is causing this and actually then treating the delirium can then you know have a
positive effect on the sort of the general sort of behaviour mood and hallucinations so
I think yeah I would just want to just underline that that's a really sort of important thing because it comes back time and time again as one of the main factors so don't be shy
about getting help calling up the GP and saying look I think I can see a change in mum or dad
I need I need your input on this so I'll just I think this that's a very important point I just
wanted to down the line so I suppose looking forward where's the research going I mean I’ve already I suppose into that that what people are very interested in is trying to understand
the causes of the hallucinations we're looking at brain scans we're looking at
recording the electrical signals in the brain really to try and understand the different brain
networks which are implicated in hallucinations we think that some of the attentional networks those
things important for directing your attention are important the visual networks the executive
or decision-making networks the visual memory networks we think that all these things interlink
and people are studying this very closely I think one of the challenges in hallucination work is that we have this issue of what we call hallucination trait versus state so what I mean by
trait is that you know that some of these may be predisposed to getting hallucinations but I have to say when we bring somebody in for a research study can you actually get them to hallucinate
no they're absolutely brilliant they're at their best so you can never get that state what is that
person experience in the hallucination and why so that that is one of the big tricky elements
for research for us and we're trying to really sort of maybe take a look at more natural studies where we study people in their own homes where they are experiencing the hallucinations
I think we're also trying to develop better scales to measure these phenomena and I think you know we you know if we got better scales to measure them then that helps us then if we give a drug
treatment does that drug treatment actually make any real world benefit for that person
so that's some of the areas where people are looking at and then I think the third element is really can we give anything to actually help with the hallucinations
and I think that you know there's a lot of areas which have been investigated people are looking at the serotonergic system and again there's been a medication which was used in Parkinson’s disease
psychosis called primovarosine it's a sort of an antipsychotic type drug but it seems to have
a much better side effect profile than some of the more traditional antipsychotics that we give
and it certainly seems to help probably people with DLB and everybody dementia
unfortunately it's not available in the UK at present and it's also enormously expensive but that has shown some benefits as I say I think what were colleagues in ucl
Suzanne reeves is looking at a medication called odansetron now some of you may have heard of this
is actually an anti-sickness medication but it alters the serotonergic system and some people
have found that it might help hallucinations so there's a drug trial going on at the moment looking at people with Parkinson’s disease and hallucinations but may extend into to live body
dementia we're also as I say we're doing a drug trial which is coming up looking at memantine
to try and help with hallucinations amongst other symptoms and I think the other areas
are non-invasive brain stimulation so this is not sticking electrodes inside the brain but actually
using things such as what we call transcranial magnetic stimulation or direct current stimulation
so far they haven't been sort of coming up with obvious sort of positive signals but people are
still looking at that and I think then there's this sort of you know as Rachel's highlighted you
know the practical things you know nobody's really taking a look at you know changing the lights does
that help you know removing patterned carpets you know distraction techniques I think we do need to
really sort of pin down do these things help so we really need to do more research and trials in that
I think you know two areas for me which I think are really important and again come back to anecdote what I’ve seen and what Rachel's into that is that you know if people are tired
hallucinations come on more frequently and I think again trying to improve people's sleep can help a
lot so you know if somebody's drinking a lot of tea and coffee and is not sleeping through the
night and then they get tired during the daytime maybe that's a contributor towards hallucinations
maybe there's some medications which we can use to sort of reset the sort of the body clock as it were to help people sleep through the night which might again help
with hallucinations but again this is more in the sort of research domain also you know I
think we've talked about eyes being a problem some people as we get older we you know you experience
problems of you know getting glaucoma getting cataracts we don't fully understand it but we
think maybe that you know again having these eye problems might sort of contribute to
you know having the hallucinations as well and there's a bit of work to try and unpick that but
you know what I would say practically is that you know make sure you know you get your eyes tested
if you've you know if you've got good going cataracts see something they see whether you need to have the cataracts removed there's a little bit of small amount of data suggesting that
maybe removing cataracts might help hallucinations in some people so I think that's you know that's
another area so I you know I there's a there's a quite a lot I think I mean one of the major
things that I’ve noticed for Lewy body dementia in the past three years and Jacqui you'll probably comment on that from the Lewy Body Society is that there's a lot more interest in everybody dementia
overall there's a lot more interest from you know the pharma companies looking at new treatments we
never had this interest before and you know so people are doing a lot more drug trials which
is really great for the condition because there's been a real lack of that for many years so I would
be you know optimistic that in the next few years that we might start to see some better treatments
particularly for hallucinations so I think that's all I’m gonna say I’m being a little bit vague but
I think that's because the field is still a little bit vague as well thank you John-Paul for that I’m
sure people found that really useful and thank you Rachel if people are interested in research
we would direct people to our website and to register their interest on joint dementia research
to take part and we do get contacted by individual researchers from a wide range of institutions
across the UK where they've got specific projects and not necessarily ones that we are funding
but if we get contacted where they're looking for people to participate please keep checking
out our website because we will post details of these really encouraging projects on our website
so moving on to questions from our participants we've got a number of questions in the Q&A box
which I'll now start to go through and we'll answer as many as we can so the first one is I
would like to ask about a reoccurring delusion hallucinations with my dad firstly he believes
my 13 year old son is dead which is very difficult and distressing for us both and
he has his me and he has this memory that he was in a car accident any advice would be appreciated
who would like to take that one first sir shall I give it again Rachel you go Rachel I mean I I think I mean I’m sure Rachel will
comment this this may be a sort of combined pharmacological and non-pharmacological approach
but Rachel I'll let you go first yeah so I think it's back to what I was saying before about
looking at how much distress this is causing for somebody and I think what John-Paul touched on
it before about for some people hallucinations can get very strongly linked into what we call
delusions so this false belief and it sounds like this might be the case Susan with your dad so I
think checking out how fixed is this you know is there any way that at points that he can see that
it might not be true so finding out is there an opening and is there any ways or tips that he can
you can give him that help him think to check it out with somebody so if he's worried and we I
didn't mention but we have just developed our new leaflet which is based on tips that both people
with who've experienced solutions hallucinations but also family carers about what might help them
and certainly for people who've got a bit of insight helping them develop strategies you
need to any strategy you have to practice and people might need help with practicing them but
you know giving him if he starts to think this is there some a cue is there something that he can
do that will kind of shift him away from thinking that a little bit I think if it is really causing
and that does sound very distressing that I think also talking to the you know whether it be the
neurologist or the psychiatrist or the GP about is there something that can do does he does he
need his medication reviewed so that is there something that's making it worse that can be changed or as John-Paul said before about trying a new medication I don't know if you something you
wanted to ask John-Paul yeah I mean I think that this sort of highlights a very important point of
that you know it is like the brain gets railroaded into particular states as it were and again this
is an area of research so you know recurring themes seem to be very common whether that's seeing something or seeing something plus having a I suppose a delusional story around that and when
you get that combination it can be particularly troublesome and problematic and if you've got a
lack of insight into that and I think that you know this is why sort of a pharmacological and
non-pharmacological approach is probably best here the pharmacological side of things might help just
I suppose reduce down that sort of the degree of high fixed ideas in someone's head and
you know again you know looking at is what's the you know what medications are there that we might
actually try and reduce or stop versus them what needs to be introduced or changed potentially
and you know when certainly from my own clinical practice when there is this very marked delusional
intensity to things that's where perhaps where some of the antipsychotics can be helpful
and you know we use things such as quetiapin is one of the drugs that we use and another one which some people use particularly the neurologists in in very sort of selected people is another
one called clozapine it's not so much used in this country but it's used in the us a lot and so you
know these things may help just shift things colon estuaries inhibitors also have there in place
as well but maybe when there's sort of there's delusions the antipsychotics are slightly better
but need to be used as I said before with a very high degree of caution but when we have
these sort of practical conversations with you know people with you know living with everybody dementia and their families it's all also about quality of life so you know it's balancing up
maybe there might be a little bit of increased risk of being on this drug but if my quality of life is better then that that's often you know something that people would go for
because you know this does sound incredibly distressing for the gentleman in question
thank you moving on another question my husband was originally diagnosed with Parkinson’s
he only developed hallucinations after being prescribed with madapa and then cinema
these were reduced somewhat since the introduction of rivastigmine
are they likely to return again as they were very distressing at one point
again very good question I think first of all we all can hallucinate under the right circumstances
that's you know where that's the nature of humankind as it were
I suppose what we have is we have a line here uri it may be actually a very high threshold
before you might hallucinate so you've got to be really quite unwell very marked delirium but if you've got Lewy body dementia threshold is lower if you've got Parkinson’s it's also lower
now when you give some medications which are pro hallucinatory or cause hallucinations potentially
then you're much more likely to hit that line much earlier on and then we have medications
which bring it things down a bit so it's about the positioning of that line so what I would say is
that you know there is a potential that they may reoccur sometimes I have to say a lot of people
actually when you've got the medications optimized they don't necessarily occur or don't occur to the
same severity so you know we may look at you know in certain circumstances about you know
altering the mother power dose the timing of the doses or the cinnamon doses and then you
know with the combination of the rivastigmine and memantine may also help control things but you
know I think again coming from the back to that point of delirium you know if the hallucination
suddenly re-emerged then that would sort of ring the bell for me well is there something else which is triggering this is it something like delirium I mean Rachel I don't know if you
want to add anything to that particular question I think you've covered it really JP I think as you
say I mean again as you said earlier on actually people do change don't they quite a lot and so I
have found sometimes medications being tried and it hasn't been effective and then later on it can
be reintroduced and I think you know our instinct is that oh no that's I’ve been that's been tried I don't want to try it again but often if it isn't going to cause any harm then I think sometimes
it's worth giving it a go I haven't come across loads of people where they've where realistic
means something like me as being beneficial in reducing hallucinations I in my experience
haven't found that they've occurred later but sometimes I guess that's sometimes to do with
the nature of this condition that it can progress a little bit quicker than other conditions and
that might be just worse and bearing in mind that sometimes people do deteriorate and as awareness and cognition deteriorates perhaps people's responses may reduce as well
and again we what we've sometimes seen is people earlier under the condition are given a call and asterisk inhibitor they find that that's too activating they feel a bit agitated
and then it's right oh wait we can't try that again but an actual fact as things perhaps progress a little bit and how the brain changes maybe the rivistigmine being
reintroduced might actually be beneficial I mean there's you know with caution of course
I think but sometimes we just have to be aware that the condition is evolving and changing
over time so sometimes you know it's a bit of a bit of a black heart it has to be said
managing the medications but you know I think I think being willing to adapt is important
thank you next question how do you explain what is happening to the to the brain to the person living
with Lewy body dementia in the families especially when they have such different experiences
the person living with Lewy body dementia really believes that the visual hallucinations and we've just touched on this a little bit are real while the family members recognize their
hallucinations I think we've covered a little bit of that but have you got anything to add Rachel
yeah I mean I think yeah how we can have talked about it I guess sometimes it's I think it's very hard as families to adjust the way that we communicate with each other
because as I said our instinct is to want to kind of bring that person back to our reality
we see something changing or they're hallucinating or thinking something is real that isn't
our instinct is we don't want that to happen so we want to kind of bring people back to what we see
as our reality and as I said before sometimes that doesn't always help so it it's difficult
I think to ask I often kind of practice with families about when this happens what can you
try and then trying out different responses and seeing which one seems to work best and so it
might be just accepting that's what the person is experiencing and not disagreeing with it might be
the best thing it might be just sitting with them whilst they're if they're experiencing something distressing and saying you know I know you can see that and it must be upsetting but I’m here
it's okay distracting them using something like a relaxation or music or as I was saying before a
different using a different sense but yeah I think one of the biggest adjustments is for families is
about trying to accept this this is something that perhaps we can't change I don't know that answers
yeah I’m mute Jacqui the famous on mute the favourite zombie yet John-Paul again we've touched
on this but I don't know whether you've got anything to add to this question what's the best medical intervention for aggressive hallucinations like murdering and seeing dead bodies yeah
and I mean I have seen people who have experienced these things and you know again
you sort of ask about sometimes there is a background history perhaps they were you know involved in a war or something like that often the cases there's no association there so
where is this coming from and it can be incredibly graphic and incredibly distressing
for people experiencing these things and I think as I say that's where perhaps if it's a sort of very strong fixed ideas maybe the antipsychotic medications might help some people I think the
other thing that we have sort of noticed as well is when these very negative hallucinations
is sometimes exploring with people what their mood is what they're feeling because we know the depression is very common in low body dementia and it doesn't necessarily manifest in it
oh I feel you know sad it may manifest in other ways physical symptoms agitation anxiety
and sometimes actually managing that sort of depression anxiety element actually might have a
a sort of a knock-on benefit in terms of sort of the content of the hallucinations now sometimes
that's just some degree of you know reassurance through to then actual antidepressant medication
but that's something also we consider which I don't know if you want to add anything to this one
no just that it's incredibly distressing isn't it if somebody's experiencing something like this
yeah I don't think I’ve got anything to add really John-paul you've got it
you know a relatively I suppose positive message that you know with the right tinkering to use the
word of you know interventions we some you know we can often get to a place where people are
not experiencing quite the degree of of these sort of severe hallucinations
I have to say what we don't tend to do very well is get rid of hallucinations completely but we often get to a state where hallucinations are manageable that they're only intermittent
or they're not distressing so I think what I would say is if there is these if you're getting these
problems then really you know speaking to your GP speaking to you know your specialist and looking
at what ways there are to manage this and of course if there's a you know a high degree of sort of concerns and risks then you're clearly that as Rachel's highlighted you know you need to get
you're seeking more immediate help for this and I think if this is also a new phenomena then think
is there something going on which is triggering this such as delirium okay thank you I’m conscious
of time I'll try to combine a couple of the questions so a couple of questions from kirsty
if and again we've touched a little bit on this if somebody's having hallucinations frequently
every day and they're becoming more frightening to the person they've tried to
reduce they've tried to they've increased medication things have got worse it hasn't
reduced the hallucinations and generally just getting more frightened what would you advise
JP I don't know if you want to answer something about good typing because it can be variable concert in different people yeah and again I mean this this comes back to why we need to do
more research studies because quatiopen is the one of the few antipsychotics we tend to reach for and that's mainly because it's got a slightly better side effect profile than some of the other
antipsychotics which we know can cause very serious side effects in people with liver
body dementia but unfortunately the evidence of saying does quote hype and actually work
is a little bit you know a hazy from one of a better word and I think that that does make it
sort of challenging if the quotation is not necessarily working do you carry on increasing it that's one option but that doesn't help everybody do you try another agent I think this is where
really specialist input is really required and you know sometimes it might even require a very sort of very close monitoring you know if you wanted to try a different antipsychotic
clozapine has been used in some people but again that requires blood tests and lots of people can
get side effects from that medication and I have to say you know I always go back to it is there
anything that we can you know first do no harm is there anything that we need to be looking at that that person's taking already which needs to be altered or changed is the cholinesterase inhibitor
is has that been optimized have we tried me montane have we tried anything else before
we start you know thinking about alternative antipsychotics because I have to say you know the there is real challenges I’ve had some people who have been put on respiratory and it's worked
wonderfully but other people have been put up in respiration and they've ended up in hospital and you know when Ian McKeith did the first studies with everybody to mention the reason
why it you know he thought there seems to be this different type of dementia is because he was seeing people on the wards coming into hospital they were given antipsychotic medication
and he would go back and they weren't there they had died you know it's it you know that's a consequence of antipsychotics and that's how he thought well there must be this different type of
dementia so we have to be very cautious as that's to be said and I don't have any right answers it's
often coming down to the individual of how you manage that individual so what might be the answer
for one wouldn't be the answer for another which you know does make everybody dementia challenging
to treat yeah I mean just to add to that Jacqui I think when somebody is so distressed and something
so frightening and medications have been tried at home and they're not either making things worse
or I’m not helping it's not ideal but sometimes an inpatient admission might be what's needed
just to so that things can be tried in a in a safe place and be monitored I know
in patients admissions aren't necessarily what people might want but sometimes it might be the best way so for example something trying like clozapine you know that often is
that needs to be monitored very carefully so that was the only thing I would be adding to that but
it might be it depends who's involved in the treatment I often find that you know GPs need a bit of a nudge to make a referral back to psychiatry or to neurology
to review things as John-Paul was saying his own overview of what other medications
what other things are happening that may be making things worse is really important and sometimes I mean it just add to that point that Rachel's main is I think that day hospitals
also have their place that's sort of intermediate to going into the hospital but you know allows that sort of close monitoring and we I know we've had a few people come through our day
hospital being put on clozapine that way so that that can work as well depends on the local setup
okay so one final question will try to combine a few things the difference between hallucinations
and delusions and the different types of hallucinations like visual auditory do
they all come at the same time can they come at different periods of somebody’s diagnosis yeah so
again very good question so I suppose the first thing to say is that delusions are about having
beliefs about things and you can have delusions without hallucinations so you know that's and
often we associate delusions as part of for example schizophrenia so it's really those firm
beliefs which you cannot alter or change and you can't persuade the person otherwise and these are
sort of variants with the real world whereas hallucinations is experiencing something in a
sensory domain which isn't there so you might have visual hallucinations so seeing something
that's not there or you might have auditory hallucinations for example hearing something which is not there now in the body dementia the predominant hallucination type is visual
but we do know that hallucinations occur in other domains or modalities and you know these things
can again there's a bit of research looking at this sometimes they are sort of isolated so some somebody might have a hallucination seeing something or someone but they might also then
have an auditory illusion of hearing a bell so they're not necessarily associated other people
we call them multimodal they're coming together so the person might actually see the figure of a man
and hear his voice speaking and that sort of often tends to be those sort of multimodal ones who are
much more distressing again Rachel might want to comment on that so we they can't come and go
I have to say that the tendency if if a person is getting multimodal hallucinations that tends to be sort of the fixed it sort of occurs right the way through whereas if you're getting hallucinations
in just one modality then it sort of tends to be that again remains sort of the same the whole way
through the condition but you know I have to say I’ve just said that now and I’m sure I’m going to
see somebody you know this week you'll probably sort of dis dispel that notion that I have and it
comes back to we just don't know quite enough but I would say hallucinations and other modalities and sensory domains are more common than we think and probably are associated with more stress
yeah I was just gonna add to that point because I was just looking at the question Jacqui where that came from and I think this is just an important point about sleep and when
these experiences happen so when somebody has what we offer we refer to as rem sleep behaviour
disturbance or a disturbance where somebody has a nightmare and they're woken up or they may
not wake up themselves but it may be that they're kind of crying out and families hear them is that
I think in my experience these seem to be more multimodal actually interestingly that people
have these kind of different things going on for them it sometimes it is back to this thing about
trying to unpick what's causing what's the trigger what might be making things worse or better and
sometimes actually the sleep disturbance in itself I think John-Paul earlier on was talking about
using you know various strategies and it might include medication at some point but trying to get that sleep cycle balance because if somebody's sleep cycle is disturbed and they've been woken up
is it the hallucinations waking you up or is it the sleep are they just waking up and then experiencing something because their brains trying to work out what's happening we often don't
really know but I think it's sometimes actually treating the sleep disturbance can help with
managing some of the other symptoms yeah that's a really important point I have to say sleep rem
sleep behaviour disorder can give rise to you know people having very vivid phenomena which then come as they come awake and they're very confused and we you know these honor we call the moneroid
states and multimodal very vivid I have to say positively we've got a lot of treatments which
can actually help with rem sleep so if it's sleep which is very much strongly associated with these
phenomena you know go and see the specialists talk about potential interventions because
you know that that we do have good effective treatments for rem sleep behaviour problems
okay thank you very much John-Paul and Rachel for what I’m sure everybody on the
call will agree today has been a fantastic session if anybody hasn't seen our leaflet
please visit our website and you can download it or you can email us and request
your copies it's a really interesting leaflet which I’m sure everybody will agree so thank you
again everybody for joining us thank you bye thank you everyone bye-bye
you

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