Caring for a spouse with Lewy-Body Dementia and Cap-Gras Syndrome

Discussion in 'I care for a person with dementia' started by Davengk, Apr 27, 2015.

  1. Davengk

    Davengk Registered User

    Apr 27, 2015
    Bromley SE London
    First of all, my apologies for writing this long two-part posting, but by doing so I am ‘setting the scene’ and hope that other forum readers may find it interesting or even informative and helpful.

    About 18 months ago my wife was diagnosed with ‘Cap-Gras syndrome’ and Lewy-Body Dementia. For anyone reading this who is not familiar with Cap-Gras syndrome (Google it for more information) here is a brief description of its effects:
    Someone suffering from Cap-Gras has, as a result of their brain damage, lost the connection between the visual face recognition area in the right temporal lobe and the area of the brain that provides the emotional response to that face.

    A person with Cap-Gras may see their spouse’s face and recognize it but they don’t have the warm feeling that goes along with it. They don’t experience that feeling of familiarity and are therefore likely to think that this can’t be their spouse although he/she looks and acts exactly like him/her and even knows everything that their spouse will know about their relationship. He/she must therefore be an imposter living in the house.

    A person with Cap-Gras may also believe that his/her house is not his/her house but another one exactly like it and in exactly the same location. This is an extension of the same visual recognition problem. The house is recognized but the connection with the emotional response is missing, and as a result he/she has no feeling of familiarity, and no amount of discussion about the improbability of this occurring will convince him/her otherwise.

    For the spouse of that person it is quite traumatic and, for the person with Cap-Gras to believe she is being cared for by an imposter and not her true spouse, must be absolutely terrifying.

    These recognition problems can vary in severity from day to day and may change suddenly within an hour or even a few minutes. Problems with attention and alertness are very common and a person with DLB may fall asleep very easily by day, but have restless, disturbed nights. They may also have difficulties with judging distances and perceiving objects in three dimensions, as well as with planning and organising.

    Over the last year or so since she was formally diagnosed my wife has experienced all of the above problems and as each week passes it is very obvious to me and our family that she is progressively deteriorating. Looking after her 24/7 is quite demanding and stressful for me but I intend to carry on doing it (hopefully with some external support) since I just cannot bear the thought of ‘sentencing’ her to a nursing home all the while I am physically able to cope with her needs.

    I’ll give more details of our current situation in a second post shortly.
  2. Davengk

    Davengk Registered User

    Apr 27, 2015
    Bromley SE London
    Continuation from first posting:

    My wife is now extremely dependent on me even though she often doesn’t recognise or accept me as her husband but instead just thinks of me as a friend or one of her ‘carers’. She has spatial-awareness problems which make it difficult for her to see and pick up things, particularly her various pills even though I always put them in front of her and remind her when they are due to be taken.

    She usually manages to wash herself in the morning but I have to keep an eye on her since sometimes she turns on the washbasin taps and then forgets to turn them off again. When she has a bath, because she does not have the strength in her arms to ensure that she doesn’t slip whilst getting into and out of the bath, I have to hold and support her during these manoeuvres.

    She gets very confused when searching to find the various items of clothing that she wants to wear each day. The items on the shelves in her wardrobe are now sorted by colour and type but she still has problems finding what she is looking for without my help. I hand her each item of clothing and make sure that she does not put it on back-to-front or inside-out. She often ‘loses’ items of clothing and I have to find them for her – they are usually where they are supposed to be but she just hasn’t spotted them.

    If she feels tired and sits down in her chair during the morning or afternoon she often drops off to sleep, often for an hour or more. She finds it very difficult to concentrate on anything for any significant time, and is unable to just sit and relax watching TV or reading a book even when I am sitting with her.

    I try to break the monotony and boredom of just staying at home together by suggesting that we go out together for a walk, to the park, or down to the town to look around the shops and get a coffee. Sometimes she agrees to this but lately she seems to look for excuses not to venture far from home, however, if the invitation comes from someone else in the family, she is usually quite happy to go. She no longer feels safe leaving the house on her own so we always go out together and I hold her hand since she has difficulty seeing and negotiating steps and kerbs and getting on and off buses.

    She is always delighted to see members of her family and other friends when they come to visit her. She usually ‘comes to life’ while visitors are here and laughs and jokes with them although occasionally they have witnessed her having an ‘episode’ where her serious confusion problems cause her to say and do some very strange things. [I no longer evoke the same happy reactions because her Lewy-Body with Cap-Gras problems means that she no longer accepts me as her husband and instead just regards me as her carer. This is, and has been, by far the most stressful and difficult part of her problem for me to cope with.]

    For our evening meal I lay the table, set out her evening medicines for her, cook the meal and when we eat I help her to manage her food by cutting it up and feeding it to her where necessary. I then ensure that she picks up and swallows all of her pills.

    Most evenings, after our meal we sit together to watch TV since she is no longer able to try and solve a crossword or answer a quiz with me. If I ask her what she would like to watch (or listen to), she says that she doesn’t mind, so I put on a programme that I know she has always enjoyed, even though it’s not one that I would personally have chosen. She watches with me for a while then often closes her eyes and falls asleep, missing the end of the programme.

    At bedtime I help her remove her daytime clothes and put them away since she has problems with zips, buttons and clips. I assist her to put on her nightdress and choose what clothes she wishes to wear the next day. I help her to wash or bath if necessary.

    Usually at some point during a night she wakes up needing to use the toilet. She gets out of bed, leaves the room and crosses the landing to the toilet. Sometimes she forgets the way back to the bedroom afterwards but since I normally notice her absence from the bed very quickly I then go and find her and guide her back to bed.

    To try and easy the pressure on myself I have contacted (without success so far) several local (S.E.London) organisations to try and find some trustworthy helper who understands the effects of Cap-Gras and LBD and who could come and keep my wife company for a couple of hours on two or three days each week, or maybe even take her out for an hour or so. I have discussed this with my wife and she appears agreeable to this idea – fingers crossed that something turns up before too long!

    Anyway, that’s my story to date. I’ll be happy to hear from any other people in the forum who have also experienced the Cap-Gras syndrome within their own family and who may wish to discuss methods for coping with that very nasty and upsetting problem.
  3. clareglen

    clareglen Registered User

    Jul 9, 2013
    My mum has just died from (the primary cause) Lewy Body Dementia. I've never heard of Cap-Gras before but I recognise many of the things in your post particularly the 'this isn't my home but they've got the same cupboards and carpets', such & such 'is the same way on as home'. One night she was missing from her bed & I found her in the spare room bed & she'd often ask when we got upstairs where she was/which room she was sleeping in. I was her mam too, not her daughter. I often found it exasperating dealing with it 24/7 for years but it must have been awful for her too & I recognised that. After a stay in hospital she moved to a lovely care home where she settled really well for 5 months. She thought other deceased family members were there too so was content, before another hospital stay then hospice last week. Horrible disease.
  4. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Hello and welcome to Talking Point.

    Sorry you find yourself here but I am sure you will find Talking Point a good place to be for advice, support, understanding and friendship.

    Many of the members will have days the same as you describe so will understand your feelings., I do and my husband has Alzheimer's. The not recognising me of our home came around about the fifth year after diagnosis and in his words I was 'the nice lady who looked after him while he waited for his wife'.

    Looking forward to you joining us and seeing you post,
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Dave, (if I may call you Dave),

    Hello and welcome to TP. I'm so sorry to hear about your wife and also sorry you find yourself here. There are many kind people with stories, advice, and support to share.

    I have not heard of Cap-Gras syndrome before but was, if you don't mind me saying so, really very interested to learn about it and wanted to thank you for coming on here to post. Your post was very detailed and informative and there is no need to apologise for its length! This is a very safe place to come and share whatever you have to say, whenever you want, or need, to do so.

    Even if there aren't many members here familiar with Cap-Gras, there are plenty who have family with Lewy body dementia and certainly some of the symptoms you mention will be familiar to many of us.

    You sound a most kind and careful carer for your wife, and she is lucky to have you. I hope that you also try to care for yourself. Easy to say, difficult to manage, and often very difficult to know what "taking care of yourself" is even supposed to mean!

    There is a forum on here specifically for those with spouses/significant others with dementia, but certainly the more general forum is fine to post in as well.

    I've had a certain amount of relief, personally, from reading both current and older threads here, so you might explore some of those.

    I agree that it's very smart of you to look for some help and additional company for your wife. Best of luck to you.
  6. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    My Mum has Lewy Body Dementia and I recognise much of the behaviour/symptoms that you have described. I find this forum very helpful. I occasionally go to the Lewy Body Dementia Association website for information and advice. There is also a forum on there although it is not as well used as this one (it is a U.S. organisation so some of the information about social care systems, etc. isn't so relevant to those of us in the U.K.). The web address is I hope this helps.
  7. Davengk

    Davengk Registered User

    Apr 27, 2015
    Bromley SE London
    Firstly I just want to say a big Thank You to those forum members who have responded to my posting and for their nice comments and suggestions which I am certainly investigating further.

    It was my granddaughter who is studying Psychology at University in London who saw my wife’s confusion and then spent some time investigating on-line before she found that the symptoms of Cap-Gras Syndrome *exactly* fitted those that my wife was experiencing.

    Since then I have mentioned it to many of the medical staff and Dementia support people that we have been meeting during the last year and whilst they were all familiar with that sort of confusion being part of Lewy-Body Dementia not one of them knew that it was called Cap-Gras Syndrome (or Delusion).

    Having a specific name for the confusion episodes makes absolutely no difference to how we have to deal with the Dementia but I did find it surprising that none of the professionals had heard of it.

    I’m really impressed with this forum and really feel for some of the people posting who are in a similar position to me but with even more difficult problems to deal with. I’ll now be a regular reader of postings in the forum. Thanks again to everyone who contributes – it’s really good to know that there’s so much friendly help and support available.
  8. Lynne rob

    Lynne rob Registered User

    Nov 26, 2014
    Your post describes my mum to a tee. She has early stage Alzheimer's and has quickly progressed to these exact symptoms in just 5 months from diagnosis. Thank you soo much for sharing
  9. TBIDaughter

    TBIDaughter Registered User

    Nov 15, 2015
    New York
    Cap Gras daughter

    Hello. My dad has an almost identical life to you (I want to teach him how to get on this forum) and my mum who had a brain injury 3 years ago, also had dementia before that although we didn't realize, and may or may not have Alzheimer's, definitely has Cap Gras syndrome. I (a biologist) have tried to speak with her drs. about it but they either don't know what it is or just ignore me and my dad. ("Best Drs" in Boston, MA USA). I feel so amazed to read what could be a diary entry from my dad.
    I read about Cap Gras in 2012 but found no mention by real people. Then I read about it in a book this morning. Got on line and found you.
    My mum calls her husband of 48 uears, my dad, the nice old man who takes care of me, the other Mike, but I think her memory is from the 60s when they got married and he was a slim young man, not a 72 year old man with a bit of a belly! It is so very upsetting. It makes me cry alot. My mum knows me by phone but when I visit (an only child) she speaks about her other daughter [my name] and how marvelous [my name] is. But that's not you she says.
    We have a house in the country but she says it looks like my house, I bought a house just like this, but she gets scared there as she feels she never knows where she really is.
    Sometimes she gets really mean. That is hard to handle. She also does this with my aunt who visits once a year from Finland. But she recognizes neighbors, friends and strangers with no problem. That is also upsetting.
    I just read that one just has to try to understand and show love and call out from another room (as hearing is a different part of the brain) Hi love it's [x ] your husband/daughter] I love you!! maybe it will make them happier.

  10. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    Welcome to TP Dave, you will find a lot of help and friends here.

    I too an going down the road with OH Parkinson's it is the not wanting to leave him and the constant watching.

    I too do most of what you do each day, or should say will be doing as I am in the process of working my notice to become a full time carer.
  11. Leymoorlord

    Leymoorlord Registered User

    Mar 22, 2017
    West Yorkshire
    CapGras Syndrome

    I am absolutely new to all of this, but I can see already some elements which I recognise in my Dinkie. Thank you for sharing, I have always been a silent, contemplative type, so sharing situations is strange at present, but certainly helpful.

  12. Ginny Hendricks

    Ginny Hendricks Registered User

    Feb 18, 2016
    My father has LBD and I recognise the description of Capgras syndrome though I'd never heard of it before. Accordng to this article -
    - it's caused by a single lesion in a specific part of the brain.

    My father, now in a home and only semi-coherent, used to believe that he visited a replica house and would ask my mother where she was going to sleep among many other oddities. The day will come when all this will be fully understood and treatable: too late, alas, for today's sufferers and their families.

    Good wishes to all.

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