Allow me to introduce myself… My name is Chloe McMahon and I am a second year Health and Social Care Policy student at Ulster University. During the course of the next four weeks I will be completing placement with the Patient and Client Council. In this time, I am fortunate enough to be acting as a guest blogger on the Patient and Client Council’s blog, which I hope you will enjoy.
Dementia is something which affects many families in Northern Ireland and we only have to look at people’s experiences to see that. Last summer I worked as a care assistant, where I cared for dementia patients on a daily basis. Arriving on my first day of on-job training, with no experience of dementia of any kind, I had all sorts of expectations in my mind (plenty of knitting, episodes of Deal or No Deal on loop, being referred to as ‘dear’ and ‘lovie’, and lots and lots of Werther’s Originals). Instead, the reality of dementia hit me like a freight train. My first encounter with dementia saw me using the excuse, “I’m just popping to the loo to wash my hands” and secretly using the privacy to cry my eyes out. As I grew close to all the patients, I gradually accepted the quirks that came with their condition and no longer became upset.
Two Thursday’s ago saw ‘Dementiaville’, a three-part series focusing on those living with dementia, airing on Channel 4 for the first time. In the opening episode, we were introduced to Poppy Lodge, a dementia unit in England, where its 30 residents are cared for under the ‘butterfly household model’ of care.
The controversial butterfly household model, designed by a social worker, allows the patient to believe that his or her memories are reality. It means that the staff do not seek to correct behaviour, but instead, allow the patient to believe that their past memories are their present reality, and through such, travel back with them.
I am very fortunate that none of my family have the condition, and therefore, I appreciate that perhaps I would feel differently if I were in the position where it was my loved one who no longer recognised me or the memories we shared. However, I think we have much to learn from Poppy Lodge and the butterfly household model. For example, there are many advantages associated with the model, such as reduced anxiety and aggression and therefore, less medication having to be administered.
Place yourself in their position. Cast yourself back to a time where you discovered a loved one had passed away. Now, imagine the grief and awful feelings you were faced with. Imagine those feelings on a loop over and over again. The feelings a dementia patient feels when confronted with the death of a loved one, are as real and as painful as the ones you and I feel. Having cared for dementia patients, I can say that although they may have just asked the same question moments after you have answered it, in their mind, it is the first time they have asked the question, and in the same respect, the pain they feel on receiving the news that a loved one has died is just as devastating as it was the very first time they found out. Therefore, perhaps we should be cautious about the reality we are presenting to them time and time again. To me, any treatment which allows the patient to remain happy is the best treatment.
However, I do understand that the approach is not without its difficulties, especially for the family members who are left to come to terms with the fact that their beloved Granny no longer recognises them or remembers the 60th birthday bash they threw her (the one where she enjoyed one too many sherries and danced with the mop), or the Christmas where Grandad’s teeth fell out at the dinner table. To then accept this, and to no longer try to remind their loved one of the happy times they shared can make family members feel useless and insignificant. For many, to allow their loved one to continue to believe a situation to be real when it isn’t can make them feel like they are lying to their loved one, which can cause guilt and all sorts of feelings
Although, I don’t think there is a one-size-fits-all solution to caring for those with dementia; as each patient and family are different, and value different methods and approaches.
What do you think? Would you choose to apply the butterfly household model to the care of your loved one? Or do you think it is best to remind your loved one of the true nature of reality?
Chloe McMahon, Placement Student