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Sexual health of people living with dementia needs to be considered in aged care

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Dr Nathalie Huitema a sexual health doctor.
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Sexual health of people living with dementia needs to be considered in aged care

 

At least some of the 50 sexual assaults reported in aged care homes every week under the Serious Incident Response Scheme may be consensual, according to US sexologist Dr Nathalie Huitema.

Dr Huitema, who advocates for universal sexual consent guidelines for people living with dementia in long term care, is a keynote speaker at the International Dementia Conference, to be held in Sydney on September 5 and 6, with an address, Sex on the brain – the battleground of consent, privacy and personal rights.

Due to ageism, sexual and intimate behaviour considered normal in broader society is often categorised as abnormal and unacceptable in residential aged care, she says.

Cognitive impairment accompanying dementia further complicates the question of consent.

“Older adults in long term care need an environment that affirms and promotes sexual health,” she said,

“So, it is crucial for care staff and managers to recognise their vital role in supporting the sexual health of residents.”

Dr Huitema, a US-based sexologist and psychologist, is a world leader in the development of guidelines for sexual consent for people living with dementia in residential aged care.

Unlawful sexual contact or inappropriate sexual conduct in residential aged care homes in Australia are reportable incidents under the Serious Incident Response Scheme (SIRS).

Dr Huitema believes a significant number of the approximately 50 SIRS every week involving sex may be consensual. There were 2320 Priority 1 incidents for unlawful sexual contact or inappropriate sexual conduct in the most recent 2023-24 period.

“I advocate for a more dementia-friendly approach, where older adults with dementia are considered autonomous individuals with personal needs and wants,” she says from Massachusetts.

“Many people wrongly think that cognitive decline means you can’t give sexual consent.

“But studies show that the brain area responsible for attachment, love, and lust is actually quite basic, which challenges the idea that high-level thinking is needed for love and intimacy.

“I hope Australian healthcare is ready to focus on potential instead of deficits, promoting sexual well-being and overall quality of life.

“By understanding that individuals retain their emotional depth, we can better appreciate their full humanity, ensure they live with dignity and respect, and allow them to express their love and attachment to others.”

Dr Huitema acknowledges the change in attitudes to sexuality in residential care that she advocates calls for staff training, guidelines, implementation, time and effort.

“Staff training will enhance a positive attitude towards sexuality and guidelines will support staff in implementing a positive attitude to sexuality in daily work with residents, and family,” she said.

“We all need closeness, friendships, love, and intimacy, throughout our whole lifetime. Even in our golden years, even when we have cognitive issues.

“Sexual health is fundamental to the overall health and well-being of older adults, as it can elevate mood, improve cardiac health, and reduce pain, among other benefits.

“Depriving older adults of that seems almost counterproductive to what healthcare stands for.”

Dr Huitema’s interest in older people’s sexuality and rights arose when she worked as a psychologist in Netherlands nursing homes, leading to sexology training and her doctoral thesis on determinants of sexual consent for people living with dementia in long term care.

“As far as I know I’m the first person to do research on the determinants of sexual consent in older adults with dementia,” she said.

Dr Huitema will speak and lead a panel discussion at IDC2024 on September 5, Day 1 of the two-day international conference in Sydney.

 

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Alarming Data Reveals Widespread Fears of Discrimination Among Australians Facing Cancer Treatment

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Alarming Data Reveals Widespread Fears of Discrimination Among Australians Facing Cancer Treatment

 

A significant number of Australians are deeply concerned that factors such as their location, age, gender, sexual orientation, income, or the language they speak at home could adversely affect their cancer treatment and survival chances. This is according to new research commissioned by the Leukaemia Foundation, which highlights the pervasive fear of discrimination in the healthcare system.

The YouGov survey revealed that seven in ten Australians worry that these personal characteristics may impact their ability to receive effective cancer treatment. Millennials emerged as the most concerned, with 71% expressing fears, followed by Baby Boomers at 63% and Generation X at 62%.

With one in twelve Australians expected to be diagnosed with blood cancer—such as leukaemia, myeloma, or lymphoma—in their lifetime, the Leukaemia Foundation’s CEO, Chris Tanti, described the findings as deeply troubling. He emphasised that these fears are rooted in the broader issue of health inequity, which disproportionately affects marginalised communities.

“These latest results underscore the urgent need for greater awareness and action to create a healthcare environment that is safe, welcoming, and inclusive for everyone,” Tanti said. “We know there is a persistent and troubling cancer health divide across Australia, particularly impacting those living in regional areas, First Nations peoples, culturally and linguistically diverse (CALD) communities, and LGBTQIA+ individuals. These groups face significant barriers in accessing timely diagnoses and the best available treatments.”

The survey comes at a time when blood cancer remains one of Australia’s most deadly and prevalent diseases. Every day, 53 Australians are diagnosed with blood cancer—equating to one person every 27 minutes—and 17 people lose their lives to the disease.

Tanti further noted the geographical disparities in cancer outcomes, with 41% of Australians diagnosed with blood cancer living in regional, rural, or remote areas. These patients are statistically less likely to survive five years beyond their diagnosis compared to those in major cities, due in part to the challenges of accessing specialized care.

CALD communities face additional hurdles, particularly when English is not the primary language spoken at home. This can significantly hinder their ability to understand health information and navigate the healthcare system. Meanwhile, LGBTQIA+ individuals often experience social isolation and may delay seeking medical care due to fear of discrimination or distrust in the healthcare system.

“These issues are substantial, and it’s no surprise that many Australians are fearful about being diagnosed with cancer and their chances of survival,” Tanti said.

In response to these findings, the Leukaemia Foundation has launched a new campaign, A Fair Go, aimed at addressing the fear and uncertainty surrounding blood cancer. The initiative seeks to ensure that every Australian, regardless of their background, has the knowledge, resources, and support needed to confront blood cancer.

The campaign will also focus on supporting healthcare professionals by developing new resources and information tailored to priority population groups. Additionally, the Foundation will spearhead new initiatives and research programs to tackle the specific challenges these groups face.

“Where someone lives, their age, gender, sexual orientation, income, cultural background, or language spoken at home should not determine their chances of surviving cancer,” Tanti asserted. “It is unacceptable that seven in ten Australians live with this fear. We are committed to addressing the issue of inequity head-on, ensuring that every Australian with blood cancer has a fair go when it comes to treatment and care.”

As Blood Cancer Month approaches this September, the Leukaemia Foundation encourages all Australians affected by blood cancer, as well as those interested in learning more, to visit the Blood Cancer page on their website

 

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Aged Care Providers Urged to Address Unique Needs of Stolen Generations Survivors with Dementia

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Stolen Generations Survivors with Dementia
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Aged Care Providers Urged to Address Unique Needs of Stolen Generations Survivors with Dementia

 

As the first generation of Stolen Generations Survivors reaches old age, many now grappling with dementia, leading experts are calling on aged care providers to better understand and accommodate their unique needs. Dr. Tiffany McComsey and Harpreet Kalsi-Smith, both from the Kinchela Boys Home Aboriginal Corporation, will highlight these concerns at the upcoming International Dementia Conference in Sydney, emphasising the importance of trauma-informed care.

With approximately 17,000 Stolen Generations Survivors aged 50 and over, many are now frail and particularly vulnerable to dementia—Aboriginal and Torres Strait Islander people are three to five times more likely to develop the condition than non-Indigenous Australians. Dr. McComsey expressed concern that many aged care facilities lack an understanding of the deep trauma these individuals have experienced, which profoundly impacts their dementia journey.

One innovative approach proposed by Dr. McComsey and Ms. Kalsi-Smith is the use of life story posters. These posters, which would be created with the input of the survivors and their trusted companions, would provide a visual and narrative overview of the person’s life, including their likes, dislikes, and strategies to de-escalate potential tensions. The posters serve as a constant reminder to care staff of the individual’s background and the trauma they have endured, helping to create a more supportive and understanding environment.

Ms. Kalsi-Smith underscored the importance of these life story posters, especially for individuals with dementia who often struggle with communication and memory. “Creating a life story is a useful way to record important information about Stolen Generations Survivors and help others understand and relate to them in a supportive way,” she said.

The Kinchela Boys Home, where many of these survivors spent their childhoods, was a site of intense cultural and psychological abuse. The boys, now referred to as “uncles,” were stripped of their identities, forced to conform to an alien culture, and suffered significant trauma. Of the 600 boys who passed through Kinchela, only 50 are alive today, with seven currently living with dementia.

Aged care providers are encouraged not only to adopt the life story poster concept but also to engage in comprehensive training about the legacy of the Stolen Generations. This includes participating in truth-telling processes and ensuring all staff are equipped with trauma-informed care practices.

Ms. Kalsi-Smith highlighted the deep fear many Stolen Generations Survivors feel about entering aged care facilities, which they often associate with the restrictive environments of their childhood. This fear is illustrated by Uncle Colin Davis, a 76-year-old Kinchela Survivor recently diagnosed with dementia, who has expressed a strong desire to avoid aged care homes altogether.

Uncle Colin’s wife, Aunty Rita Davis, voiced concerns that the available aged care options near their home on the NSW South Coast would not meet her husband’s needs. “For him, it would be like the restrictions he had growing up all over again. Once you put restrictions on him, you never know what he’ll do,” she said.

Dementia Support Australia (DSA), which has provided tailored support to 50,000 people since 2016, emphasises the importance of cultural awareness and trauma-informed care training for aged care staff. DSA Head of Professional Services Marie Alford stressed that all aged care services should understand the triggers of Behavioural and Psychological Symptoms of Dementia (BPSD) in Stolen Generations Survivors and know how to safely de-escalate them.

The upcoming International Dementia Conference, hosted by The Dementia Centre, will bring these critical issues to the forefront, as aged care providers and policymakers gather to discuss the future of dementia care in Australia. As the needs of Stolen Generations Survivors become more urgent, it is clear that a tailored, culturally sensitive approach is essential for their care and well-being.

 

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Lismore Confirmed as One of Two Regional Drug Summit Forum Locations

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Lismore Regional Drug Summit Forum
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Lismore Confirmed as One of Two Regional Drug Summit Forum Locations

 

Robert Heyward

Regional Health Minister Ryan Park has confirmed that Lismore will host one of the NSW Government’s two Drug Summit regional forums on Monday, 4 November. These regional forums are designed to ensure that the unique experiences of communities in regional NSW are reflected in the larger discussions at the Drug Summit.

The summit will bring together a diverse range of participants, including medical experts, police, individuals with lived experience, drug user organizations, families, and service providers. These forums aim to build consensus on how NSW should address drug use and the associated harms.

Minister Park also announced that former NSW Deputy Premier Carmel Tebbutt and former NSW Leader of the Opposition John Brogden will co-chair the NSW Drug Summit. The Co-Chairs will collaborate with attendees to develop and prioritize solutions focused on improving community health, safety, justice, and integrated social support systems.

Minister for Health Ryan Park said:

  • “Bringing the summit to regional areas like Lismore is essential because drug use impacts communities in different ways.”
  • “It’s important that Lismore’s experiences with illicit drug use are reflected in the summit’s deliberations.”
  • “Janelle [Saffin] has been a strong advocate for her community, and it’s fitting that we can return to hear from Lismore in 2024.”

Member for Lismore Janelle Saffin added:

  • “I’m thrilled that Lismore will be hosting one of the two regional forums of the Drug Summit.”
  • “We have unique challenges here, and I am determined that Lismore’s voice will be heard in this statewide conversation.”
  • “In 1999, I participated in a successful Drug Summit, and I am excited to bring forward local perspectives once again in 2024.”

The Lismore forum will be an opportunity for local voices to contribute to a broader statewide effort aimed at addressing drug use and improving public health outcomes across NSW.

 

For more local Lismore news, click here.

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