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Harold & Mary
One in three of us will develop dementia, but if we are not one of these, most of us will be aware of or know someone with dementia, whether that is a family member, a neighbour or a friend. Despite this there is still a lack of awareness about dementia. One of the key aims of the first UK National Dementia Strategy in 2009, and subsequent policy, has been to raise the awareness of dementia in the general public.
We saw a growth in interventions, activities and projects that sought to do this, such as, Dementia Friends and Dementia Action Week (a follow on from the Dementia Action Alliance), to name a couple. Other dementia awareness raising enterprises embraced projects that were aimed at increasing dementia awareness in generalist health and social care staff within certain care settings, such as, ‘Barbara’s Story’[1] in acute hospital care. All of which have had varying degrees of success. Perhaps we need to now move on from being aware of dementia and what it entails for the person and those around them to one of understanding dementia better?
We have all seen the topic of dementia raised within tragic news items, documentaries and journalism. However, part of this growing interest and awareness also seems to be playing out in an increase in the representation of dementia in the arts, such as in TV, film and fiction. Characters with dementia have been either played a central part in these or one that is peripheral to other character(s). In creating any form of this type of ‘entertainment’ comes with it a responsibility to ensure that any portrayal of dementia is done as accurately and sensitively as possible. This may often involve a degree of research on the part of their programme developers so, as a result, Dementia UK is being asked more and more to contribute in a variety of ways in support of producers, directors and authors to offer advice and support to their various projects. It is very satisfying to be involved in the early and developmental stages of such productions, such as ‘Elizabeth is Missing’[2]; to advise the production team and actors on how a character with dementia can be best represented in each scene. However, we are often asked to provide a comment or review at the point of a film’s release, such as in the case of The Father’[3]. Some films and TV productions can often present the character with dementia in a way that does not reflect the average experience of dementia or in a common everyday context or setting, such as ‘Still Alice’[4]. Whilst based upon a true story, the central character, Alice, is played by a glamorous Hollywood actress and as Alice advances into her dementia is still presented as a beautiful and well kempt person living in a luxurious and expensive setting. In true life ‘Alice’ was a high powered academic and probably very wealthy but most people affected by dementia live ordinary lives. Can we really relate to the Hollywood images of dementia and apply this to our own dementia awareness?
I was recently asked to review a short film – ‘Harold & Mary’[5]. This is the story of a married couple where the husband has dementia and is deteriorating. He is knows he is married to Mary but remembers her as a young and pretty woman. The Mary he lives with is older and in Harold’s mind is not the Mary he sees before him. Harold’s ‘reality’ shifts with his levels of awareness changing moment by moment, hour by hour and day by day. His grasp on what is real presents him with a lot of distress at times. In conjunction his wife Mary and their children struggle to understand how to support their husband and father. Based upon a true story, Harold eventually lashes out at Mary. Harold does not understand at this moment that she is his wife and that the situation which, in his dementia, he finds threatening is not the reality of others. Sadly, Mary dies from his attack and we then move to Harold in an acute mental health setting, distraught that ‘there is a dead woman in his house’. This is a very moving film that portrays an extreme event in the context of dementia but one that shows dementia in an everyday setting. Those with experience of dementia may not be able to relate to the extreme and distressing outcome of this short film but may be able to make a connection with the ordinariness of the characters, the domestic setting but also in some of the issues that face families affected by dementia on a day to day basis; the loss of memory, the sense of carer burden and distress and in families trying to cope and understand what the person with dementia is thinking and feeling at any one time.
[1] https://www.guysandstthomas.nhs.uk/news/barbaras-storyseeing-me-dementia
[2] https://www.imdb.com/title/tt8201352/
[3] https://www.imdb.com/title/tt10272386/
Karen Harrison Dening
Head of Research and Evaluation at Dementia UK
Dementia UK
Karen has over 40 years’ experience in dementia care in a variety of settings and contexts. For the past twelve years she has worked with Dementia UK and Admiral Nursing, and is now the Head of Research and Publications. She gained a PhD at University College London focusing on advance care planning and end-of-life care in dementia. She holds honorary academic positions at the Universities of Nottingham, Liverpool and De Montfort, Leicester.
