The stigma around dementia remains massive. Dementia is one of the most feared condition by those in their 50s and 60s, perhaps partly because of what people associate with dementia. People assume that dementia results in a total loss of all cognitive capacity- it is not uncommon to hear a daughter, son or partner of a person who has just been diagnosed with dementia stating that the person will now no longer be able to manage any finances, shopping, household chores. They will not be able to have any responsibilities or make any further decisions about anything again. Occasionally I have also met people who have been excluded from their families and communities because of their diagnosis. Who have lost business’, their homes, their identity and the people they love. Generally, because the dementia has mistaken for something else. Just once I met someone who had been told she had been inhabited by “bad spirits” : the dementia.
I have recently had a number of conversations around the stigma associated with a dementia diagnosis. The difference is this time that I was talking about what we as health professionals could do to reduce this stigma.
One way of doing this is to co-produce work with people with dementia. To work together as a team. The steering group on my research project has been working with me throughout my project (3 and a half years nearly- to date). This steering group is made up of three couples- where one person has language led dementia (primary progressive aphasia- PPA), and their partners. The group provide advice and guidance on the development of my work. One aspect of this has included developing information (modules) that will alongside the intervention we are currently trialing. The group felt that we couldn’t put the intervention out, freely available, on the internet without providing some basic information on what PPA is, what conversation training is and what other resources and information there is on PPA.
We have most recently been working on the resources module. Included in this was going to be a list of communication tips and hints. Yet on discussion the group felt these tips were too narrow, too specific. They wanted to create a set of tips and hints to help people live well. To dispel some of the myth around what life is like following a diagnosis of PPA. We wrote a list of activities, and ideas on things to do (together) that are not dependent on language. Things that people in the group, their friends and family like to do. The list is long- from crafting to walking to attending concerts. And it is exciting. After we wrote the list (it took some time) the group felt electric. Everybody was excited by the list. We all felt that it was an incredibly positive thing to do. That we had created a really useful resource that will remind people of everything they CAN do.
I am now working with a colleague to create another small idea to reduce the stigma around dementia. We would like to create a video recording of an education session. The aim is to:
- Help people understand why dementia affects language and communication
- Show how people can have better conversations with people with dementia by using some simple communication strategies
- Reduce the stigma around dementia by highlighting that people with dementia lead rich and fulfilling lives, can make their own decisions and lead a good life.
We want to record it so that we can share it for free via any possible medium- the internet, word of mouth and so forth.
But what we would really like to know is would people be interested in this and what would they like us to do in such an event?
Do share your ideas and comments! They are always useful.
Despite being an adult SLT (ever since graduating) I recently went to a series of really interesting presentations on developmental language. This is not that unusual, I often listen to colleagues speaking about their work in this area. And being a PhD student is a wonderful opportunity to take advantage of the incredibly rich environment in which I am working. Even in the 4th year of my PhD I am attending these talks. Being a PhD student is an incredibly valuable experience, and writing up my thesis is not necessarily the most important part of it. Here are some interesting pearls from this recent series:
There are many links and parallels between language development in children and loss of language in adult acquired neurological conditions. One talk I attended focused on the importance of stress, tone and emphasis in infant directed speech. Over-emphasising on syllables and words can enable infants to start parsing and following sounds, words and turns. Using strategies such as eye contact, and the name of the child can act as signals to gain and maintain attention. It is not so different in dementia- using a persons name and making eye contact are incredibly useful for gaining their attention, and for many who have less cognitive resources and reduced auditory processing there is now evidence indicating they may benefit from that type of over-emphatic speech. Despite it being previously considered fairly patronising it may be an important strategy to aid comprehension for some individuals with dementia.
Learning conversational turn taking from parents or communication partners is another area that is thought to contribute to language development. Both in the act of, and content of turns, breakdowns and repairs in conversation. The communication partner plays an important and valuable role in conversation and turn taking. Similarly the skills of the communication partners are often vital for adults with aphasia and dementia. People with aphasia and dementia are often able to continue participating in many aspects of conversational undertaking, and a skilled communication partner can enable them to continue doing so. A skilled communication partner can modify their turns to scaffold the conversation for the person with aphasia or dementia.
I have always found how children learn to read a fascinating process. And the research indicates that learning to read by sounding out- so through the phonics system, is equally effective as learning to read by learning the orthographic word forms. On imaging however it appears that the phonics route is significantly less cognitively effortful. And given that a shocking number of the adult population are not able to read (around 15% apparently) this may be useful for teaching adults. Adult literacy is extremely difficult to untangle. It may often be complicated by dyslexia, social communication difficulties and socio-economic status. But we also know that adults with developmental dyslexia may be more at risk of dementia than their peers. Perhaps this type of work could join some of these dots and provide some suggestion as to why this might be the case.
As a bilingual person, bilingualism fascinates me. There is some suggestion that children spread their vocabulary acquisition across two languages, but eventually catch up. That reading and writing suffer as a consequence, and it could be difficult to translate skills from one language to another. But the idea that bilingualism can protect against the onset of dementia is wonderful. Yet Asia is experiencing significant increases in the number of people living with dementia and here bilingualism is far more complex- people switch through 2-3-4 languages within a conversation, perhaps based on ease of word retrieval or contextual cues. How does this factor in?
There is so much exciting research in my department, and listening to fields outside my own can be inspiring. We can draw links, think creatively and explore alternative theories. There is so much more work to be done! I feel so privileged to be exposed to this environment, to be working in such a fascinating field. I can’t wait to do more than my PhD- to continue in this clinical-academic field. I have so many ideas!