The cultural challenges of working with people with dementia
There are a range of views about dementia across different cultures, and indeed within individual cultures, often based on personal experience as well as a ‘society’ view of the condition. Different cultures and different individuals construct dementia differently. So how are we to approach work with people with dementia?
Let’s start with those different views. There are many and they often start with stereotypical perceptions of old age. Even Shakespeare was at it in ‘As You Like It’ in the ‘Seven Ages of Man’ Monologue, which ends with old age and death describe thus…
….turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.
(As You Like It, Act II Scene vii)
Here is old age constructed as a time to be ‘without’ (sans). And not just without a few things but indeed without everything! This mirrors in a dramatic way the view often held of older people in society that their worthy years are past them and they are a drain on the state rather than an asset to embrace. You will have heard no doubt the phrase ‘demographic time bomb’ in relation to the cost of older people, particularly those with dementia, on the government purse. There is research by Edinburgh University (Spijker, J & MacInnes, J 2013 – link at the end of the blog) that says the government are calculating the ‘drain’ on the tax payer incorrectly by assuming that once people are beyond working age they become a ‘drain’ when in fact most people only require significant health and social care in the last few years of their lives. Given that we are living longer these years are postponed until later during which time older people continue to contribute to society in many ways. Some continue to pay income tax and all continue to pay VAT on goods and services. And that’s just the direct financial aspect! Never mind getting into what many older people contribute in other ways – caring for grand children, caring for older relatives, volunteering …all of which can remove a burden from the government to fund such things. Innovative thinking has led to a care home also running a crèche with the older people taking on roles they are able to and I recollect a French example where people with dementia supported history teaching about the war in a school as their long term memory had remained intact.
As social workers we need to understand that how people with dementia are perceived has a cultural element to it. In a 2008 Australian Study by the Australian Alzheimers Society, ‘Perceptions of Dementia in Ethnic Communities’, they discovered a catalogue of misperceptions. For some dementia was seen as a normal part of aging and just needed to be accepted. It was maybe a consequence of the stress of life. Others saw dementia as highly stigmatised so were reluctant to seek support for fear of actions being imposed upon them. This inevitably would lead to late diagnosis and possibly missed opportunities to offer support, medical or social. The ever-present fear older people have of being placed in a care home was present. For some there was a spiritual or religious element to it. Maybe it was a punishment of sorts for past wrongs by the individual or their family. And for others it was highly disrespectful to tell the person they had dementia, which would lead to problems in providing support to the person.
So what can we do as social workers when faced with the challenge of working with people with dementia and particularly those from cultures where there might be a different view about dementia than the one our understanding and value base leads us to? We need to be culturally competent in terms of our practice.
The Alzheimers Society offers us some advice. They say understand the way the person defines health and well being and how their culture might influence this. Think about ideas of family and support and how different cultures may approach these ideas. Understand how your own culture constructs old age and dementia and how this effects how you might act and think. Both you and the people you are working with may bring stereotypes to the table. Stereotypes don’t just influence how we perceive others but also how those who are the subject of the stereotype see themselves. Get to know the aspects of the person’s culture that are important to them. Don’t be afraid to ask but do some research first. You will need to develop approaches that accommodate diversity. Adapt your approach so it fits. Think ‘do I need more time than I usually would’, ‘do I need to avoid certain times of day or certain days’, and ‘do I have to approach the family in a different way’.
Showing people that you value their ‘difference’ will go an awfully long way to fostering a good working relationship.
You can access the Australian Alzheimers Society report here:
You can read the Edinburgh University Report ‘Population Aging’ here:
And more on Cultural Competence from the Alzheimers Socity here:
Stephen J. Mordue is a social work lecturer at the University of Sunderland. He worked as a practitioner and as a manager working with older people. He is interested in communication skills, working with people with dementia, and is passionate about being organised! …..amongst many other things! He drinks a lot of coffee, plays guitar, sings, and runs a bit…. and also writes at www.socialworkshorts.co.uk