One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.

This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.

In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).

We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.

Surviving disease or surviving the system

Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.

Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.

By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.

The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.

The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.

Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.

Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:

We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.

Assets of survivorship

In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.

This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.

But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.

In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.

Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.

I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.

Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.

Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.

Persistence pays

The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.

One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.

Persistence is another layer of wrangling and it often causes distress.

Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.

Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.

When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.

We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.

Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago

This article is republished from The Conversation under a Creative Commons license. Read the original article.

What’s the difference? is a new editorial product that explains the similarities and differences between commonly confused health and medical terms, and why they matter.

Changes in thinking and memory as we age can occur for a variety of reasons. These changes are not always cause for concern. But when they begin to disrupt daily life, it could indicate the first signs of dementia.

Another term that can crop up when we’re talking about dementia is Alzheimer’s disease, or Alzheimer’s for short.

So what’s the difference?

What is dementia?

Dementia is an umbrella term used to describe a range of syndromes that result in changes in memory, thinking and/or behaviour due to degeneration in the brain.

To meet the criteria for dementia these changes must be sufficiently pronounced to interfere with usual activities and are present in at least two different aspects of thinking or memory.

For example, someone might have trouble remembering to pay bills and become lost in previously familiar areas.

It’s less-well known that dementia can also occur in children. This is due to progressive brain damage associated with more than 100 rare genetic disorders. This can result in similar cognitive changes as we see in adults.

So what’s Alzheimer’s then?

Alzheimer’s is the most common type of dementia, accounting for about 60-80% of cases.

So it’s not surprising many people use the terms dementia and Alzheimer’s interchangeably.

Changes in memory are the most common sign of Alzheimer’s and it’s what the public most often associates with it. For instance, someone with Alzheimer’s may have trouble recalling recent events or keeping track of what day or month it is.

We still don’t know exactly what causes Alzheimer’s. However, we do know it is associated with a build-up in the brain of two types of protein called amyloid-β and tau.

While we all have some amyloid-β, when too much builds up in the brain it clumps together, forming plaques in the spaces between cells. These plaques cause damage (inflammation) to surrounding brain cells and leads to disruption in tau. Tau forms part of the structure of brain cells but in Alzheimer’s tau proteins become “tangled”. This is toxic to the cells, causing them to die. A feedback loop is then thought to occur, triggering production of more amyloid-β and more abnormal tau, perpetuating damage to brain cells.

Alzheimer’s can also occur with other forms of dementia, such as vascular dementia. This combination is the most common example of a mixed dementia.

Vascular dementia

The second most common type of dementia is vascular dementia. This results from disrupted blood flow to the brain.

Because the changes in blood flow can occur throughout the brain, signs of vascular dementia can be more varied than the memory changes typically seen in Alzheimer’s.

For example, vascular dementia may present as general confusion, slowed thinking, or difficulty organising thoughts and actions.

Your risk of vascular dementia is greater if you have heart disease or high blood pressure.

Frontotemporal dementia

Some people may not realise that dementia can also affect behaviour and/or language. We see this in different forms of frontotemporal dementia.

The behavioural variant of frontotemporal dementia is the second most common form (after Alzheimer’s disease) of younger onset dementia (dementia in people under 65).

People living with this may have difficulties in interpreting and appropriately responding to social situations. For example, they may make uncharacteristically rude or offensive comments or invade people’s personal space.

Semantic dementia is also a type of frontotemporal dementia and results in difficulty with understanding the meaning of words and naming everyday objects.

Dementia with Lewy bodies

Dementia with Lewy bodies results from dysregulation of a different type of protein known as α-synuclein. We often see this in people with Parkinson’s disease.

So people with this type of dementia may have altered movement, such as a stooped posture, shuffling walk, and changes in handwriting. Other symptoms include changes in alertness, visual hallucinations and significant disruption to sleep.

Do I have dementia and if so, which type?

If you or someone close to you is concerned, the first thing to do is to speak to your GP. They will likely ask you some questions about your medical history and what changes you have noticed.

Sometimes it might not be clear if you have dementia when you first speak to your doctor. They may suggest you watch for changes or they may refer you to a specialist for further tests.

There is no single test to clearly show if you have dementia, or the type of dementia. A diagnosis comes after multiple tests, including brain scans, tests of memory and thinking, and consideration of how these changes impact your daily life.

Not knowing what is happening can be a challenging time so it is important to speak to someone about how you are feeling or to reach out to support services.

Dementia is diverse

As well as the different forms of dementia, everyone experiences dementia in different ways. For example, the speed dementia progresses varies a lot from person to person. Some people will continue to live well with dementia for some time while others may decline more quickly.

There is still significant stigma surrounding dementia. So by learning more about the various types of dementia and understanding differences in how dementia progresses we can all do our part to create a more dementia-friendly community.

The National Dementia Helpline (1800 100 500) provides information and support for people living with dementia and their carers. To learn more about dementia, you can take this free online course.

Nikki-Anne Wilson, Postdoctoral Research Fellow, Neuroscience Research Australia (NeuRA), UNSW Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.