The way people living with dementia experience the world can change as the disease progresses. Their sense of reality or place in time can become distorted, which can cause agitation and distress.

One of the best ways to support people experiencing changes in perception and behaviour is to manage their environment. This can have profound benefits including reducing the need for sedatives.

One such strategy is the use of dolls as comfort aids.

What is ‘doll therapy’?

More appropriately referred to as “child representation”, lifelike dolls (also known as empathy dolls) can provide comfort for some people with dementia.

Memories from the distant past are often more salient than more recent events in dementia. This means that past experiences of parenthood and caring for young children may feel more “real” to a person with dementia than where they are now.

Hallucinations or delusions may also occur, where a person hears a baby crying or fears they have lost their baby.

Providing a doll can be a tangible way of reducing distress without invalidating the experience of the person with dementia.

Some people believe the doll is real

A recent case involving an aged care nurse mistreating a dementia patient’s therapy doll highlights the importance of appropriate training and support for care workers in this area.

For those who do become attached to a therapeutic doll, they will treat the doll as a real baby needing care and may therefore have a profound emotional response if the doll is mishandled.

It’s important to be guided by the person with dementia and only act as if it’s a real baby if the person themselves believes that is the case.

What does the evidence say about their use?

Evidence shows the use of empathy dolls may help reduce agitation and anxiety and improve overall quality of life in people living with dementia.

Child representation therapy falls under the banner of non-pharmacological approaches to dementia care. More specifically, the attachment to the doll may act as a form of reminiscence therapy, which involves using prompts to reconnect with past experiences.

Interacting with the dolls may also act as a form of sensory stimulation, where the person with dementia may gain comfort from touching and holding the doll. Sensory stimulation may support emotional well-being and aid commnication.

However, not all people living with dementia will respond to an empathy doll.

The introduction of a therapeutic doll needs to be done in conjunction with careful observation and consideration of the person’s background.

Empathy dolls may be inappropriate or less effective for those who have not previously cared for children or who may have experienced past birth trauma or the loss of a child.

Be guided by the person with dementia and how they respond to the doll.

Are there downsides?

The approach has attracted some controversy. It has been suggested that child representation therapy “infantilises” people living with dementia and may increase negative stigma.

Further, the attachment may become so strong that the person with dementia will become upset if someone else picks the doll up. This may create some difficulties in the presence of grandchildren or when cleaning the doll.

The introduction of child representation therapy may also require additional staff training and time. Non-pharmacological interventions such as child representation, however, have been shown to be cost-effective.

Could robots be the future?

The use of more interactive empathy dolls and pet-like robots is also gaining popularity.

While robots have been shown to be feasible and acceptable in dementia care, there remains some contention about their benefits.

While some studies have shown positive outcomes, including reduced agitation, others show no improvement in cognition, behaviour or quality of life among people with dementia.

Advances in artificial intelligence are also being used to help support people living with dementia and inform the community.

Viv and Friends, for example, are AI companions who appear on a screen and can interact with the person with dementia in real time. The AI character Viv has dementia and was co-created with women living with dementia using verbatim scripts of their words, insights and experiences. While Viv can share her experience of living with dementia, she can also be programmed to talk about common interests, such as gardening.

These companions are currently being trialled in some residential aged care facilities and to help educate people on the lived experience of dementia.

How should you respond to your loved one’s empathy doll?

While child representation can be a useful adjunct in dementia care, it requires sensitivity and appropriate consideration of the person’s needs.

People living with dementia may not perceive the social world the same way as a person without dementia. But a person living with dementia is not a child and should never be treated as one.

Ensure all family, friends and care workers are informed about the attachment to the empathy doll to help avoid unintentionally causing distress from inappropriate handling of the doll.

If using an interactive doll, ensure spare batteries are on hand.

Finally, it is important to reassess the attachment over time as the person’s response to the empathy doll may change.

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.

In a world first, we heard last week that US surgeons had transplanted a kidney from a gene-edited pig into a living human. News reports said the procedure was a breakthrough in xenotransplantation – when an organ, cells or tissues are transplanted from one species to another. https://www.youtube.com/embed/cisOFfBPZk0?wmode=transparent&start=0 The world’s first transplant of a gene-edited pig kidney into a live human was announced last week.

Champions of xenotransplantation regard it as the solution to organ shortages across the world. In December 2023, 1,445 people in Australia were on the waiting list for donor kidneys. In the United States, more than 89,000 are waiting for kidneys.

One biotech CEO says gene-edited pigs promise “an unlimited supply of transplantable organs”.

Not, everyone, though, is convinced transplanting animal organs into humans is really the answer to organ shortages, or even if it’s right to use organs from other animals this way.

There are two critical barriers to the procedure’s success: organ rejection and the transmission of animal viruses to recipients.

But in the past decade, a new platform and technique known as CRISPR/Cas9 – often shortened to CRISPR – has promised to mitigate these issues.

What is CRISPR?

CRISPR gene editing takes advantage of a system already found in nature. CRISPR’s “genetic scissors” evolved in bacteria and other microbes to help them fend off viruses. Their cellular machinery allows them to integrate and ultimately destroy viral DNA by cutting it.

In 2012, two teams of scientists discovered how to harness this bacterial immune system. This is made up of repeating arrays of DNA and associated proteins, known as “Cas” (CRISPR-associated) proteins.

When they used a particular Cas protein (Cas9) with a “guide RNA” made up of a singular molecule, they found they could program the CRISPR/Cas9 complex to break and repair DNA at precise locations as they desired. The system could even “knock in” new genes at the repair site.

In 2020, the two scientists leading these teams were awarded a Nobel prize for their work.

In the case of the latest xenotransplantation, CRISPR technology was used to edit 69 genes in the donor pig to inactivate viral genes, “humanise” the pig with human genes, and knock out harmful pig genes. https://www.youtube.com/embed/UKbrwPL3wXE?wmode=transparent&start=0 How does CRISPR work?

A busy time for gene-edited xenotransplantation

While CRISPR editing has brought new hope to the possibility of xenotransplantation, even recent trials show great caution is still warranted.

In 2022 and 2023, two patients with terminal heart diseases, who were ineligible for traditional heart transplants, were granted regulatory permission to receive a gene-edited pig heart. These pig hearts had ten genome edits to make them more suitable for transplanting into humans. However, both patients died within several weeks of the procedures.

Earlier this month, we heard a team of surgeons in China transplanted a gene-edited pig liver into a clinically dead man (with family consent). The liver functioned well up until the ten-day limit of the trial.

How is this latest example different?

The gene-edited pig kidney was transplanted into a relatively young, living, legally competent and consenting adult.

The total number of gene edits edits made to the donor pig is very high. The researchers report making 69 edits to inactivate viral genes, “humanise” the pig with human genes, and to knockout harmful pig genes.

Clearly, the race to transform these organs into viable products for transplantation is ramping up.

From biotech dream to clinical reality

Only a few months ago, CRISPR gene editing made its debut in mainstream medicine.

In November, drug regulators in the United Kingdom and US approved the world’s first CRISPR-based genome-editing therapy for human use – a treatment for life-threatening forms of sickle-cell disease.

The treatment, known as Casgevy, uses CRISPR/Cas-9 to edit the patient’s own blood (bone-marrow) stem cells. By disrupting the unhealthy gene that gives red blood cells their “sickle” shape, the aim is to produce red blood cells with a healthy spherical shape.

Although the treatment uses the patient’s own cells, the same underlying principle applies to recent clinical xenotransplants: unsuitable cellular materials may be edited to make them therapeutically beneficial in the patient.

We’ll be talking more about gene-editing

Medicine and gene technology regulators are increasingly asked to approve new experimental trials using gene editing and CRISPR.

However, neither xenotransplantation nor the therapeutic applications of this technology lead to changes to the genome that can be inherited.

For this to occur, CRISPR edits would need to be applied to the cells at the earliest stages of their life, such as to early-stage embryonic cells in vitro (in the lab).

In Australia, intentionally creating heritable alterations to the human genome is a criminal offence carrying 15 years’ imprisonment.

No jurisdiction in the world has laws that expressly permits heritable human genome editing. However, some countries lack specific regulations about the procedure.

Is this the future?

Even without creating inheritable gene changes, however, xenotransplantation using CRISPR is in its infancy.

For all the promise of the headlines, there is not yet one example of a stable xenotransplantation in a living human lasting beyond seven months.

While authorisation for this recent US transplant has been granted under the so-called “compassionate use” exemption, conventional clinical trials of pig-human xenotransplantation have yet to commence.

But the prospect of such trials would likely require significant improvements in current outcomes to gain regulatory approval in the US or elsewhere.

By the same token, regulatory approval of any “off-the-shelf” xenotransplantation organs, including gene-edited kidneys, would seem some way off.

Christopher Rudge, Law lecturer, University of Sydney

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