Ageing and intellectual disability

This is a research project through a partnership between the University of NSW, La Trobe University and Monash University.

## Survey study

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The life expectancy for people with Intellectual Disability (ID) is increasing dramatically, ensuring a rapidly expanding group of elders with ID. Yet little is known about the physical and mental health problems for this group or about the needs of family members caring for an older person with ID.

The University of New South Wales, La Trobe University and Monash University are conducting a study about what it’s like for people with an intellectual disability as they get older. The study aims to:

* Learn about the rates of particular problems such as dementia and physical or mental health problems in people with intellectual disability.
* Learn about what things may help a person with intellectual disability to remain healthy as they age.
* Learn more about the needs of parents, carers and health service providers of older people with intellectual disability.

### Recruitment

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Potential participants and carers will be recruited from the databases of disability service providers by receiving information about the study in the mail. We are also advertising in newspapers and speaking at various forums.

### Eligibility for the study

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* Aged 40 years of age or older, and
* Have an intellectual disability, and
* Live within the Local Government Areas selected for the study – Greater Bendigo, Swan Hill, Loddon, Greater Shepparton and the Macedon Ranges.

### Description of study

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* The study consist of a set of questionnaires to be completed by the person with ID’s main carer, and
* A set of questionnaires to be completed by the family member most involved the person with ID’s care (this might be the same person as the main carer, or it might be another person).
* We hope to repeat these questionnaires 12 and 24 months later.

This study is part of a larger study being conducted by the University of New South Wales, where clinical assessments will take place, involving face-to-face interviews, blood tests and a brain MRI scan. These assessments will not be conducted for our rural participants in Victoria at this time.

### Who is involved?

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Our research team includes Associate Professor Julian Trollor from the University of New South Wales, Dr. Jennifer Torr from Monash University, Professor Teresa Iacono from La Trobe University (Bendigo), Professor Perminder Sachdev, Professor Henry Brodaty, Dr. Wei Wen, and Dr. Elizabeth Evans from the University of New South Wales, and other research staff.

## Experiences of Caring study

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An outcome of increased life expectancy of people with intellectual disability (ID) is that they face the same age-related health and mental health conditions, with some being particularly susceptible to Alzheimer’s Disease (AD). Caring for these adults often falls to parents or other family members who themselves are facing age-related conditions and a reducing capacity to provide care.

The study aims to: a) document the experiences of rural family carers of elders with intellectual disability (ID) in terms of their health, mental health, and health service utilisation; and b) explore the relationship between carer health and wellbeing, and that of elders with ID whom they support.

### Recruitment

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Potential participants and carers will be recruited from the databases of disability service providers by receiving information in the mail. Letters to organisations will be sent out inviting various service providers to take part.

### Eligibility for the study

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* Family carers: Family member of an adults with intellectual disability who lives in rural and regional Victoria and is 18 years of age or older. The person with intellectual disability in their care should be aged 40 years or older with a confirmed or suspected diagnosis of Alzheimer’s disease.
* Service providers: Service provider who may provide direct services to or have some experience in working with adults with intellectual disability and/or their carers. The person with intellectual disability should be aged 40 years or older with a confirmed or suspected diagnosis of Alzheimer’s disease.

### Description of study

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* For family carers: Participation involves a face to face interview with family carers. The interview will focus on their experiences of caring for an adult with ID, the person with ID’s health and healthcare needs and the carer’s own health. We will also ask about any health concerns the family member may have in relation to caring for an adult with ID and their experience of seeking health care and support services.
* For service providers: Participation involves attending a focus group or individual interview. The focus group discussion or individual interview will explore the supports family carers seek and how accessible these supports are. We will also explore what service providers see as their role in supporting carers and/or adults with ID and Alzheimer’s disease and how services can better work together to meet their needs.

### Who is involved?

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Our research team includes Professor Teresa Iacono from La Trobe University, Dr. Jennifer Torr from Monash University and Ms. Natalie Crothers from La Trobe University.

## Community Forum

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Understanding and addressing mental health inequalities. Speaker: A/Prof Julian Trollor, Chair of Intellectual Disability Mental Health at University of New South Wales. Audio and video in other formats at Archive.org. Understanding and addressing mental health inequalities (Audio only). Speaker: A/Prof Julian Trollor, Chair of Intellectual Disability Mental Health at University of New South Wales. Audio and video in other formats at Archive.org. Approaching dementia assessment for people with intellectual disabilities by Dr Jenny Torr, Director of Mental Health at the Centre of Development Disability Health, Monash University. Audio and video in other formats at Archive.org. Approaching dementia assessment for people with intellectual disabilities. Speaker: Dr Jenny Torr, Director of Mental Health at the Centre of Development Disability Health, Monash University. Audio and video in other formats at Archive.org. Supporting active and healthy ageing - Service system challenges by Prof Christine Bigby, Research Leader of Living with Disability at La Trobe University. Audio and video in other formats at Archive.org. Supporting active and healthy ageing Service system challenges. Speaker: Prof Christine Bigby, Research Leader of Living with Disability at La Trobe University. Audio and video in other formats at Archive.org.

A community forum on 13th February 2013 was held at La Trobe University Bendigo Campus to bring together families who support an older adult with intellectual disability, and services providers from the disability, health and mental health, and aged care sectors.

### Programme

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Hosted by La Trobe Rural Health School and Professor Teresa Iacono

* 2:25 pm Welcome from Professor Jane Farmer
* 2:30 pm Associate Professor Julian Trollor Understanding and addressing mental health inequalities
* 3:10 pm Dr. Jennifer Torr. Approaching dementia assessment for people with intellectual disabilities
* 3:50 pm Professor Christine Bigby. Supporting active and health ageing: Service system challenges
* 4:30 pm Panel Discussion

Enquiries: Ms. Natalie Crothers

All presentations can be downloaded from iTunes U

### Feedback

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91 People who attented the free community forum completed the feedback question. Of those who completed the feedback sheet:

* 17% were family members/carers.
* 33% were health workers.
* 21% were disability workers.
* 28% ticked other and listed organisations such as Alzheimer's Australia, Corrections Victoria, Centrelink, Electrol Office, Chaplain services and La Trobe University staff and students.

General statistics from the feedback questionnaire

* 85% would like to be notified of a similar free community event/forum.
* 49% would like to be notified of any research activity - Either to participate or to find out more information
* 20% would like to be notified when the event is posted onto iTunes U.
* 58.2% agree that the talks were helpful and 27.5% strongly agree.
* 56% agree that they could understand the talks and 33% strongly agree.
* 50.5% agree that they could ask a question if they wanted to and 36.3% strongly agree.
* 44% agree that the building was easy to find and 28.7% strongly agree.

Some comments about what they enjoyed the most...

* “Talk by Prof. Christine Bigby as it was more appropriate for our situation and understanding. Keeping us updated on NDIS will be fantastic”
* “Julian and Christine spoke "more realistically" in terms of people I support”
* “Good variety of speakers, all exceptionally knowledgeable in their areas”
* “The speakers all have a "real" understanding of some of the hard issues we face”
* “Information regarding dementia. Learning the direction needed to take”
* “Guest speakers - presenting facts and information. Particularly information regarding dementia assessment”
* “Really enjoyed Jenny's talk on dementia and the information on various forms of diagnosis”
* “Depth of knowledge of the presenters - Julian was very engaging/easy to follow”
* “Knowledge and expertise of speakers. Their extensive backgrounds interesting. Slides great”
* “Service system challenges. Approaching the difficulties, barriers RE: systematic barriers”
* “All speakers were interesting”
* “Having the talk in a rural area”
* “Jenny Torr's assessments were very relevant to my observation of clients that I volunteer with”

Some comments about what they enjoyed the least...

* “Hard to hear at times. Rushed. Seating was difficult”
* “No Break. Sitting too long”
* “Use of acronyms that I was not familiar with”
* “A bit more interactive would have been good. eg. having question time at the end of each presentation, not all at the end”
* “Quiet speakers - small print on overhead PowerPoint”
* “Total emphasis on what is wrong with our system - They are not working”
* “Felt that it was a lot of information to listen too. Some graphics difficult to see. Room too bright”
* “What is happening politically went over my head”
* “No handouts”
* "Straining to hear speakers"
* "I found that all that was talked about were the problems but no real answers"

Some suggestions on how to improve future similar events...

* “Can't think of any. More along similar lines would be ok”
* “Perhaps have some talks in the Shepparton area”
* “Have a microphone for audience and louder microphone for speakers”
* “More specifics to either families/carer or professionals. Each require different information presented in different ways”
* “Run very well – congratulations”
* “Venue more open. Notes to take home”
* “Stretch breaks. List? Tasks we can take away to improve/enhance circumstances”
* “Break in middle for networking”
* “Terrific opportunity to hear leaders in field and cutting edge issues and research. Thank you so much”
* “More time for questions. Microphone for questions”
* “Opportunity to move around for brief time during session”
* “Having handouts available before hand to bring (eg. send out when people register) or available at the venue”
* “It was great to be given an understanding on how to link services and where to go when it will be needed and what path we need to follow”
* "Earlier start"
* "You also need to present the good things that are happening in Australia to encourage parents instead of all the doom and gloom"

Other comments and feedback...

* “Would be interested to find out more on specific training for mental health clinicians and intellectual disability”
* “Having this type of forum is fantastic. Being able to have this type of forum maybe twice a year would be great”
* “Would be good to have take away lists of local resources available in these areas. How to get involved in action towards goals local service providers to speak of what they can offer”
* “I would hope that the members of parliament present will act on the wish list”
* “Having a break would have been very beneficial”
* “Clearly a huge issue and topics. More time on each to go into more depth at some stage”
* “Perhaps a morning forum would suit better for people travelling and for those with families”
* “It is possible to do these presentations in other areas? Albury/Wodonga”
* “The theatre was a bit too cold. I know we needed to be awake but it got quite cold by the end. The loved the enthusiasm of the presenters - their knowledge and passion was just beautiful and fantastic. Lucky us”
* “Well presented with useful information”
* “Forum was well conducted but would like to see an earlier start with a break for refreshments half way. Would like to see a legal person involved in future forums”
* “Very interesting information from all speakers today and would attend more of these seminars in the future”
* “In future there could be 2 separate sessions, one geared towards professionals/workers and the other to the members of the community”
* “Thanks for having free car park option available”
* “Much food for thought, will be looking at our residents with perhaps clearer vision”
* “Great information and good to have a broad range of guest speakers”
* “Thank god for the dedication of the speakers”
* "Felt it was a lot more directed at professionals in acedemia not much info for on the ground workers, nothing I haven't heard before"

* I attended this forum as an educational designer for La Trobe University who is supporting Teresa and Natalie in the development of open educational resources that derive from events such as these. As a lay person on the general topic, I particularly enjoyed Chris Bigby's presentation. Chris was clear and concise, with a message that was easy (but not simple) to grasp. Chris seemed to be calling for a more in depth consideration of the issues, and a more holistic, people focused (less than institute focused) and sustainable approach to development. I'm looking forward to anything I can do to help get this information out to the public, in usable formats and on popular and convenient channels. Leighblackall (discuss • contribs) 02:29, 4 March 2013 (UTC)