{"id":1212,"date":"2024-10-31T12:08:37","date_gmt":"2024-10-31T01:38:37","guid":{"rendered":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/?p=1212"},"modified":"2024-11-01T14:50:35","modified_gmt":"2024-11-01T04:20:35","slug":"investigating-dementias-hidden-diagnosis-and-support-challenges","status":"publish","type":"post","link":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/2024\/10\/31\/investigating-dementias-hidden-diagnosis-and-support-challenges\/","title":{"rendered":"Investigating dementia\u2019s hidden diagnosis and support challenges"},"content":{"rendered":"

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People with intellectual disability are a priority population in Australia\u2019s national dementia action plan, yet accurate diagnosis of the onset of dementia is proving problematic.<\/p>\n

Unravelling possible solutions for this hidden problem is being examined by Flinders University\u2019s Caring Futures Institute<\/a>, with a view to improve early diagnosis and post-diagnostic support that helps provide better and more focused long-term health benefits for people with intellectual disability.<\/p>\n

\u201cThere have been great advances in health improvements for people with intellectual disability, who are now living to similar life expectancy rates as the general population \u2013 but this also means they are encountering a significant increase in aged-related diseases, such as dementia,\u201d says Dr Irene Belperio<\/a> from Flinders\u2019 Disability and Community Inclusion team.<\/p>\n

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Dr Irene Belperio<\/figcaption><\/figure>\n

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\u201cIt\u2019s a significant problem for this population, because we now know that about 70 per cent of adults with Down syndrome will also have Alzheimer\u2019s Disease by the age of 65.\u201d<\/p>\n

Dr Belperio is Chief Investigator of a Flinders University Innovation Partnership Seed Grant project \u2013 \u201cAdults with intellectual disabilities and dementia: The dementia healthcare advocacy experiences of adults with intellectual disabilities affected by or suspected of being affected by dementia, their informal caregivers, and disability services.\u201d<\/p>\n

This cross-college project, which also involves Caring Futures Institute researcher Associate Professor Ruth Walker<\/a>, has received co-investment from Minda (the largest support provider for intellectually disabled people in South Australia), comes after Dr Belperio steered an earlier preliminary project which identified the scale of this under-addressed problem. She also learned from this research that support workers of people with intellectual disability are not trained to also address problems associated with dementia, and that they feel inadequate when required to deal with this additional aged-related disease.<\/p>\n

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Associate Professor Ruth Walker<\/figcaption><\/figure>\n

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The new one-year research project, which currently has its research team preparing preliminary research material, will conduct focus groups with Minda clients early next year. The aim is to understand the healthcare experiences of adults with intellectual disabilities affected by dementia.<\/p>\n

\u201cThese are critical questions that we want to ask, because we need to learn about the experiences adults with intellectual disabilities affected by dementia are having,\u201d says Dr Belperio. \u201cWe need to know the extent to which they are involved in their diagnosis and health care pathway. This hasn\u2019t been documented before, and it\u2019s necessary to offer effective support.\u201d<\/p>\n

The focus groups will also pose questions to disability support workers, managers involved in the process of dementia screening, and informal care givers (which includes family and friends who provide non-paid support).<\/p>\n

\u201cGPs are a critical link in this process. At the moment they are ill-equipped and reluctant to make initial screening tests for dementia among people with intellectual disability, especially non-verbal clients, and this is increasing very long wait times in public health care for clients to even have an initial dementia diagnosis.<\/p>\n

\u201cWith issues like this facing people with intellectual disability from the outset, their care pathway to address dementia is even more difficult \u2013 and this is amplified by a high turnover in disability care staff numbers, which also compromises the development of long-term relationships and trust with clients who really rely on that.\u201d<\/p>\n

A project advisory group will also be convened featuring adults with intellectual disabilities affected by dementia, their informal supporters, along with key stakeholders from the disability and healthcare sectors to help guide the research and the eventual analysis of its findings.<\/p>\n

\u201cIn terms of caring adequately for dementia patients, the initial diagnosis is a key moment, because that is when the care pathway gets designed and managed,\u201d explains Dr Belperio. \u201cWe need to identify what barriers and facilitators are present at that moment \u2013 and from this we hope to develop strong healthcare advocacy guidelines for people with intellectual disability that can be used by Minda.\u201d<\/p>\n

Dr Belperio is confident that the information provided by the focus groups will lay a foundation for additional research that can provide a structured, evidence-based approach to better dementia diagnosis and care for people with intellectual disability. \u201cConducting research alongside adults with intellectual disabilities has its challenges, but it\u2019s a critical health care advocacy issue that demands attention. We can\u2019t afford for this to remain a hidden area.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

  People with intellectual disability are a priority population in Australia\u2019s national dementia action plan, yet accurate diagnosis of the onset of dementia is proving problematic. […]<\/p>\n","protected":false},"author":5500,"featured_media":1225,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3205],"tags":[],"class_list":["post-1212","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-inclusion-and-disability"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/posts\/1212","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/users\/5500"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/comments?post=1212"}],"version-history":[{"count":0,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/posts\/1212\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/media\/1225"}],"wp:attachment":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/media?parent=1212"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/categories?post=1212"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/tags?post=1212"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}