As our population ages, we’re living longer and dying older. End-of-life care is therefore an increasingly important part of aged care. In Australia, around 50% of people aged over 85 die in an aged care home.

But what does this mean for those who work in aged care? Research suggests aged-care staff experience a unique type of grief when residents die. However, their grief often goes unrecognised, and they may be left with insufficient support.

Forming relationships over time

Aged-care staff don’t just do tasks such as helping with showering or delivering meals, but engage actively and connect with residents.

In our own research we’ve spoken with aged-care staff who care for older people both in aged-care facilities and in their own homes.

Aged-care staff are aware many of those they look after will die, and that they have a role in supporting older people as they come to the end of their life. In their caring role, they will often form meaningful and rewarding relationships with the older people in their care.

As a result, when the older person dies, this can be a source of profound loss for aged-care workers. As one told us:

I know I cry over some of them that die […] You spend time with them and you love them.

Some aged-care workers we interviewed talked about being present with the older person, talking to them or holding their hands as they died. Others spoke of how they shed tears for the person who had died, but that the tears were also for their loss, because they have known the older person and been involved in their life.

I think what made it worse was when her breathing got very shallow, and I knew she was coming to the end. I did go out. I told her I was going out for a minute. I went out and I had a cry because I wish that I could have saved her, but I knew that I couldn’t.

Sometimes aged-care staff indicated there wasn’t an opportunity for them to say goodbye or be acknowledged as someone who had suffered a loss, even if they had been providing care to the person for a number of months or years. One aged-care worker noted:

If people die in hospital, that’s another grief. Because they don’t get to say goodbye. Often the hospital won’t tell you.

Aged-care staff often must also support families and loved ones as they come to terms with the death of a parent, relative or friend. This can add to the to the emotional toll for staff who may be experiencing their own feelings of grief.

Cumulative grief

Repeated experiences of death can lead to cumulative grief and emotional strain. While staff saw meaning and value in their work, they also found regular exposure to death challenging.

One staff member told us that with time and seeing multiple deaths, you can “feel a little robotic. Because you’ve had to become that way to manage”.

Organisational issues such as staff shortages or high workloads can also exacerbate these feelings of burnout and dissatisfaction. Staff highlighted the need for support in coping.

Sometimes all you want to do is talk. You don’t need someone to solve anything for you. You just want to be heard.

Supporting aged-care staff to manage their grief

Aged-care organisations must take steps to support the wellbeing of their workforce, including acknowledging the grief many feel when older people die.

Following the death of an older person, offering support to staff who have worked closely with that person and acknowledging the emotional bonds that existed are powerful ways of recognising and validating staff grief. Simply asking the staff member how they are going or giving them the chance to take some time to process that the person has died is a good place to start.

Workplaces should also encourage self-care more broadly, promoting activities such as taking scheduled breaks, connecting with colleagues, and prioritising time for relaxation and physical activities. Staff value workplaces that encourage, normalise, and support their self-care practices.

We also need to look at how we can normalise the ability to talk about death and dying within our families and communities. A reluctance to recognise death as part of life can add to the emotional load staff carry, especially if families see dying as a failure of care.

Conversely, aged-care staff have consistently told us how meaningful it is to receive positive feedback and acknowledgement from families. As one worker recalled:

We had a death over the weekend. A really long-term resident here. And the daughter drove in especially this morning to tell me what fantastic care she had. That makes me feel better, that what we’re doing is right.

As members of families and communities, we need to recognise aged-care workers are uniquely vulnerable to feelings of grief and loss, often having built relationships with those in their care over months or years. Supporting the wellbeing of this important workforce supports them to continue to care for us and our loved ones as we age and come to the end of our lives.

Jennifer Tieman, Matthew Flinders Professor and Director of the Research Centre for Palliative Care, Death and Dying, Flinders University and Priyanka Vandersman, Senior Research Fellow, College of Nursing and Health Sciences, Flinders University

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

An article published this week in the prestigious journal Nature Medicine documents what is believed to be the first evidence that Alzheimer’s disease can be transmitted from person to person.

The finding arose from long-term follow up of patients who received human growth hormone (hGH) that was taken from brain tissue of deceased donors.

Preparations of donated hGH were used in medicine to treat a variety of conditions from 1959 onwards – including in Australia from the mid 60s.

The practice stopped in 1985 when it was discovered around 200 patients worldwide who had received these donations went on to develop Creuztfeldt-Jakob disease (CJD), which causes a rapidly progressive dementia. This is an otherwise extremely rare condition, affecting roughly one person in a million.

What’s CJD got to do with Alzehimer’s?

CJD is caused by prions: infective particles that are neither bacterial or viral, but consist of abnormally folded proteins that can be transmitted from cell to cell.

Other prion diseases include kuru, a dementia seen in New Guinea tribespeople caused by eating human tissue, scrapie (a disease of sheep) and variant CJD or bovine spongiform encephalopathy, otherwise known as mad cow disease. This raised public health concerns over the eating of beef products in the United Kingdom in the 1980s.

Human growth hormone used to come from donated organs

Human growth hormone (hGH) is produced in the brain by the pituitary gland. Treatments were originally prepared from purified human pituitary tissue.

But because the amount of hGH contained in a single gland is extremely small, any single dose given to any one patient could contain material from around 16,000 donated glands.

An average course of hGH treatment lasts around four years, so the chances of receiving contaminated material – even for a very rare condition such as CJD – became quite high for such people.

hGH is now manufactured synthetically in a laboratory, rather than from human tissue. So this particular mode of CJD transmission is no longer a risk.

What are the latest findings about Alzheimer’s disease?

The Nature Medicine paper provides the first evidence that transmission of Alzheimer’s disease can occur via human-to-human transmission.

The authors examined the outcomes of people who received donated hGH until 1985. They found five such recipients had developed early-onset Alzheimer’s disease.

They considered other explanations for the findings but concluded donated hGH was the likely cause.

Given Alzheimer’s disease is a much more common illness than CJD, the authors presume those who received donated hGH before 1985 may be at higher risk of developing Alzheimer’s disease.

Alzheimer’s disease is caused by presence of two abnormally folded proteins: amyloid and tau. There is increasing evidence these proteins spread in the brain in a similar way to prion diseases. So the mode of transmission the authors propose is certainly plausible.

However, given the amyloid protein deposits in the brain at least 20 years before clinical Alzheimer’s disease develops, there is likely to be a considerable time lag before cases that might arise from the receipt of donated hGH become evident.

When was this process used in Australia?

In Australia, donated pituitary material was used from 1967 to 1985 to treat people with short stature and infertility.

More than 2,000 people received such treatment. Four developed CJD, the last case identified in 1991. All four cases were likely linked to a single contaminated batch.

The risks of any other cases of CJD developing now in pituitary material recipients, so long after the occurrence of the last identified case in Australia, are considered to be incredibly small.

Early-onset Alzheimer’s disease (defined as occurring before the age of 65) is uncommon, accounting for around 5% of all cases. Below the age of 50 it’s rare and likely to have a genetic contribution.

The risk is very low – and you can’t ‘catch’ it like a virus

The Nature Medicine paper identified five cases which were diagnosed in people aged 38 to 55. This is more than could be expected by chance, but still very low in comparison to the total number of patients treated worldwide.

Although the long “incubation period” of Alzheimer’s disease may mean more similar cases may be identified in the future, the absolute risk remains very low. The main scientific interest of the article lies in the fact it’s first to demonstrate that Alzheimer’s disease can be transmitted from person to person in a similar way to prion diseases, rather than in any public health risk.

The authors were keen to emphasise, as I will, that Alzheimer’s cannot be contracted via contact with or providing care to people with Alzheimer’s disease.

Steve Macfarlane, Head of Clinical Services, Dementia Support Australia, & Associate Professor of Psychiatry, Monash University

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