industry & policy anecdotally, people were saying that they felt 50 – 80 per cent of their client groups were showing some sort of change in their cognition.
Not all of the changes in cognition would be attributed to a dementia, but the figures at this particular moment in time are something which we’ re trying to fine up a little bit more through the outcomes of this paper, and through the better collaboration between the homelessness service sector and ourselves along with the dementia and aged-care health sector.
Some of the risk factors that we see, which are associated with people who have been living with homelessness, or experiencing homelessness, or even those that are at risk of homelessness, they can be very different to what the general population may see. For example, there are certain risk factors that really raised the risk of developing a dementia in later life. These risk factors include things like having a poor diet, particularly a diet deficient of vitamin B group, [ and ] physical inactivity is quite a major issue in people who are experiencing homelessness. We also have things like alcohol, and smoking, and the effects that they have on the body.
The other thing as well is that lots of people who are living with homelessness, because of the environmental and social influences upon them, are often living with chronic health conditions, and some of those conditions, such as cardiovascular disease, will certainly raise the risk of developing a dementia in later life. Other things we look at closely are the higher levels of people who have diabetes and respiratory conditions.
All of these raise the risk for people who are living in marginalised, disengaged lifestyles, in terms of having a dementia.
What additional challenges do homeless people with cognitive impairment face when it comes to engaging with healthcare? It is very difficult, because some people might be living a fairly transient lifestyle, but to have some sort consistency of engagement with health services can be difficult, just purely from that aspect alone. For other people, it can be about how they prioritise things within their own living circumstance. So for example, they will be prioritising things like, how do they get a meal that day? How do they wash their clothes? How do they have shelter? Where do they seek out warmth or cooling?
Traditionally, the healthcare advocacy that people experiencing homelessness can have can be quite poor, and may require quite a high level of advocacy.
What were some of the comments from people working in the dementia, aged care, homelessness or health sectors that struck you? One of the comments I received during the course of scoping for the backgrounds of this paper included direct comments from people who are experiencing homelessness. Some of their viewpoints were around the fact that it was hard for them to make hospital appointments, even if that had been arranged at that point. It was difficult for them to get the access to health professionals, and feel comfortable in what they perceived to be institutionalised healthcare systems. They were largely quite suspicious about that, they were unsure of the intentions, and they were very alarmed that it would be a reflection of their lifestyles. That became an immediate barrier for a lot of people who were living with homelessness.
Some of the support workers in the homelessness sector were finding that other things were being prioritised for people in terms of their healthcare. Their immediate needs around things such as mental health took a big priority, and lots of referrals around behaviours which may be associated with a change in cognition were often referred through mental health services as well. To ensure the correct engagement was very difficult. Access to the specialists that were dealing with cognitive assessment was a pathway which wasn’ t obvious for lots of those sector workers to make a referral into.
In terms of other barriers, people are unsure about the financial capacity to link into services. There’ s basically a lack of access to good and appropriate agedhealthcare services for people experiencing homelessness, and who may have a dementia due to financial barriers as well. In our experience through the comments that we were receiving from the sector, they were saying there’ s only a small proportion that would likely be assessed for a dementia. It really is because of this disengagement, and also a lack of understanding as well from everybody involved.
What are some of the knowledge gaps you hope to address through the new discussion paper? There were some very obvious knowledge gaps, because there were lots of assumptions made about dementia. [ For example ] that it is purely a condition which affects older people, that dementia is Alzheimer’ s disease and only Alzheimer’ s disease.
There were a lot of knowledge gaps around how dementia can impact behavioural aspects of how a person lives and manages. Also, if somebody has an acquired brain injury, or a mental health condition, and has cognitive changes, it’ s about teasing out some of those aspects so that people can make appropriate referrals. One of the things the paper is aiming to do is see workers from the homelessness sector develop an improved awareness and understanding of the range of cognitive impairment, and of course with dementia.
At the same time, we hope that workers from the dementia, health and aged-care services will show more of an understanding around providing care in the context of someone who has experienced long-term homelessness, and that they will commit to gaining an improved understanding of their unique service and care needs, and be responsive to those needs as well. It is really quite different when someone has to live with entrenched homelessness, of how we actually provide the care and support that they should be receiving, both to move them through cognitive assessment and through to a timely dementia diagnosis, if that’ s appropriate.
What are some key steps that need to be taken to improve support for homeless people with dementia? I think the biggest step we are aiming for is to see far greater prospects of collaboration, and that will ultimately help to ensure people who are experiencing homelessness, or who may be living at high risk of homelessness, and who may have a dementia, receive the most appropriate support, and that the referrals that they get are for the conditions that are actually affecting them. That is one of the key steps. In order to do that, there would be a number of other steps, and so it requires this partnership by way of providing cross-sector knowledge, this transfer of knowledge between the sectors, and appreciation and understanding. And it requires the aged-care sector to take on board the unique considerations, and design programs and services that are inclusive. I think that these are going to be important steps to ensure that somebody who has lived with entrenched homelessness will be able to have appropriate assessments and good dementia care. ■
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