Jana Koch

Dementia – Experiences of family care givers

An Online Survey Exploring Protective Factors Against Stigma

What is this research about?

This online survey, led by Professor Kaarin Anstey, is aiming to help us better understand the experiences of family care givers of people with dementia. In particular, this research is looking into the impact of negative attitudes or disbeliefs – so called stigma.

Stigma can not only negatively impact the person with dementia directly, but also their family members, leading to significant negative impacts on health and well-being. Aiming to reduce the negative impact of stigma on family caregivers, this survey is exploring which factors can act as buffer against stigma.

The outcome of this study will help inform future interventions about these important protective factors against stigma and contribute to promote health and well-being for family caregivers of people with dementia.

What does participation involve?

The online survey is anonymous and will take approximately 30-35 minutes to complete. The survey will ask you questions about yourself (e.g. age, sex, and education), your caregiver role and experiences associated with it, your attitudes towards ageing and dementia knowledge, your emotions and reactions to challenges, and your social relationships.

Who can participate?

You are eligible to complete the online survey if you are:

• Over the age of 18
• Currently caring for a family member with a formal diagnosis of dementia
• Have access to internet to complete the survey

If you would like to hear more about the study or receive the link to the online survey, please fill out the form below or contact us directly on stigma@neura.edu.au or 02 9399 1116.

Self-management and Health Promotion in early-stage dementia with E-learning for carers (SHAPE)

After receiving a diagnosis of dementia it is very important that individuals and families have access to support and advice, to help people regain control, plan for the future and carry on living a life that is meaningful to them.

The ‘SHAPE’ research study is a multi-site trial, working in collaboration with Norway and the UK. This study aims to test a new online training and support group for people in the early stages of dementia and e-leaning programme for care partners.

What does the study involve?

Participants will be randomly allocated to either the (a) intervention or (b) control group of the research study.

a) The intervention group: People with dementia will be invited to an online training and support group, comprising of 10 weekly online sessions, each lasting up to 2 hours. During the group, people will be supported to develop skills in areas including decision-making, symptom management, healthy habits adapting and coping. Care partners will receive an e-learning program following similar themes with some additional support.

b) The control group: Like with a lot of research studies, some participants will be randomised to the control group, which means they will not receive the intervention from our research team. However, after study completion, both participants and families can receive the e-learning course comprising of the educational material used in the group.

All participants and care partners will also be asked to attend 3 assessment sessions to answer questionnaires relating to health and wellbeing.

What are the benefits of this study?

We hope that your participation in this study will provide you and your care partner with more information on dementia and strategies to make positive changes to health and wellbeing. Some participants might also benefit from the social aspects of attending an online group session, such as sharing and listening to different strategies to promote living well with dementia. Additionally, the information gained from this research study could positively direct future research as well as influence the support offered to people in the early stages of dementia and their support network.

SHAPE groups have been running for the past few months and participants have contributed with enthusiasm and engagement:

‘Joining the SHAPE group each week helped me understand how important it is to have fun in life, exercise regularly and read more books. I learned so much about dementia and feel more confident sharing my experience with my family.’

This study may be suited to you if:

• You have a diagnosis of dementia
• You are 65 and older
• You are comfortable communicating, reading and writing in English
• You have vision and hearing which allow you to engage comfortably in a group setting
• You have a care partner (family member or friend) who is willing to dedicate a small amount of time to the study

If you are interested in hearing more about the study, please fill out the form below or contact us directly on 02 9399 1116 or shape@neura.edu.au.

Expression of Interest

Contact

For further information about this research study, please contact us on:

Jana Koch (Research Assistant)

E-mail: j.koch@neura.edu.au

Phone: (02) 9399 1116

This research study is funded by The National Health and Medical Research Council. This study has been approved by UNSW human research ethics committee, reference number: HC190440.