organisations supporting carers
online courses and webinars
dementia REFRAMED australia
OUR SISTER WEBSITE
Our online workshops are designed to help you understand more about dementia in positive and creative ways, and how to care well for someone with dementia – caring well means caring for carers!
Dementia Reframed’s approach is distinctive.
We see dementia as a social experience because it is all about relationship. Dementia changes everyone – not only the person who brain is changing, but it will change all these relationships as well. Understanding how and why these changes take place, and how they change over time, helps us to keep relationships strong.
Dementia Reframed focuses on supporting carers. They are the key to a quality of life with dementia! Good care is always based on good relationships: carers can become aware of why changes occur and how to respond well – that means a care has to be able to adapt their thinking, attitudes, expectations – and more. That is not always easy but awareness helps us manage so much better.
For carers, family members and friends
The education sessions and programs are designed in response to the specific needs of people caring for or supporting a family member living with all forms of dementia. The programs focus on providing knowledge, strategies and support that is aligned with the various stages of dementia.
To find out the dates of the education sessions in your area call Dementia Help Line on 1800 100 500 or have a look at the Calendar of educational events (the link below). Most of the education sessions are free and you can register on the webpage.
For those Living with Dementia
This session will benefit people who have received a recent diagnosis and in the early stages of living with dementia. This session is not suitable for people without a diagnosis, people living with dementia who do not acknowledge their diagnosis, have behavioural concerns or who are non-verbal.
wicking centre, university of tasmania
There are two free courses and two University programs relating to dementia and aged care.
Understanding Dementia Massive Online Course (MOOC)
Understanding Dementia addresses the foremost issues surrounding dementia, providing avenues for discussion as well as rich global networking opportunities to engage with this major international health Issue. The course provides knowledge designed to maximise quality of life across the trajectory of dementia for people with the condition, their families and carers.
Preventing Dementia MOOC
The Preventing Dementia MOOC investigates the best available evidence about dementia prevention, drawing on a range of expertise from around the globe. You will have the opportunity to engage in online discussions, and can also participate in new research in this field, to help us determine the most effective ways to help people reduce their dementia risk. At the end of the Preventing Dementia MOOC, there is also the opportunity to undertake an assessment of your individual risk.
university college of london
Too Many Faces of Dementia
This free online four-week course will give you a unique insight into dementia through the stories, symptoms and science behind four of the less commonly diagnosed forms of dementia.
Dementia Care: Staying Connected and Living Well
This is a course to help carers stay connected to loved ones, manage stress at home, and defuse difficult situations.
dementia specific organisations
This is a Resource List of organisations who provide information and resources, in a variety of ways, to carers of people with dementia. We are not ‘recommending’ these services, but we have tried to identify ones we know are reputable and supportive. They won’t be able to help ‘everyone’ with ‘everything’, but they can often refer you on and lead you to other resources. Descriptions used below are from that organisation’s own website.
Please let us know if there are organisations we should add (or if there are any we should remove from our list). The internet means that we can access great resources developed in other countries!
AUSTRALIAN | INTERNATIONAL
teepa snow and positive approach to care (PAC)
YouTube Videos: https://www.youtube.com/user/teepasnow/videos
Facebook page (lots of great resources): https://teepasnow.com/
Teepa and PAC's motto is, 'Until There's a Cure for Dementia . . . There's a Positive Approach to Care'©. PAC works on the belief that living well with dementia is more than possible, empowering carers and those they are caring for, revolutionising the experience of caring and being cared for. They open the carer's eyes to creative solutions, strategies and ways to think about caring in a genuine and easy to access way. Definitley check out their website and facebook page!
'In an effort to educate and show the world what Dementia really does to people, we created a weekly YouTube series that is being watched by people all over the world. It’s impossible to simply read about Dementia and understand the magnitude of this disease. These real-life videos help those dealing with Dementia, those who have lost someone with Dementia, and even people that have never heard of Dementia. It's my hope that these videos will inspire people to do better in life and hold on to their loved ones while they can.'
‘The new voice for Alzheimers Australia'. A unified, national peak body for people, of all ages, living with all forms of dementia, their families and their carers. A great site for exploration, however there are many sections and sister websites catered towards carers, family, friends and community members.
Some fact and tips sheets for carers
national dementia helpline
1800 100 500 during business hours.
Up to date dementia-related news
dementia support australia
A national service, supported by funding from the Australian Government under the Dementia and Aged Care Services Fund, which administers Dementia Behaviour Management Advisory Service (DBMAS) and Severe Behaviour Response Teams (SBRT). DBMAS can be reached by phoning 1800 699 799.
Dementia Support Australia (DSA) aims to:
Improve the quality of life and care for people with dementia and their carers;
Up-skill, assist and support aged care providers in improving care for people with dementia and related behaviours; and
Ensure care services for people with dementia are responsive to their individual and diverse needs and circumstances.
This is a Dementia Care organisation based in Queensland. Many of the services listed such as the Dementia Advisory Service and Education are not available for people from other states, but the web site is valuable as it does provide useful information about different types of dementia (see the link below)
Information about different types of dementia
DEmentia Friendly Environments: ViC Health
Initially developed for use in residential aged care facilities; however could be helpful provide suggestions for at home carers
The Alzheimer Europe website arises from the Work Plan of Alzheimer Europe, which has received funding from the European Union, in the framework of the Health Programme. It is very comprehensive website containing information relating to different segments of dementia care. Two sections are useful for dementia carers and family members: Dementia and Living with Dementia including Caring for someone with dementia providing the topics such as memory and communication, daily life, changes in behaviour, medical and physical issues, coping with caring (see the links below).
Alzheimer's Disease international (UK)
This website will provide you with the latest news in dementia field. In addition, to get the latest reports and to have approach to various of resources the link below should be used.
This website is designed to help families to face dementia. Especially useful for carers and family members is a page with various coping strategies. See the link below.
live better with dementia
The aim of this organisation is to make day-to-day life a little easier for those living with or caring for someone with dementia - with helpful products and information. However, always consult a healthcare professional about which products are suitable for you and your health condition! Some very common and useful devices such as Personal Alarm & GPS Tracker are much cheaper when you order through this web-site than through others including Amazon Australia (https://dementia.livebetterwith.com/products/personal-alarm-gps-tracker)
young dementia uk
Young Dementia UK's goal is for everyone affected by young onset dementia has access to specialist support to adapt and live life. Carers of YOD can benefit from the resources of this websites.
The website contains various resources and opportunities to connect with dementia friendly communities and families of people living with dementia in UK. The Guide for cares can be downloaded from the link below.
Alzheimer's association (US): Caregiving page
“Whether you provide daily caregiving, participate in decision making, or simply care about a person with the disease — we have resources to help”. This is a message from this large and very influential organisation, which can help you in different ways. The resources for carers include different stages of caring from early stage to the end of life with a stress on changes in behaviour, communication, daily care plan, and on carers health and how to maintain it.
family caregiver alliance: national centre on caregiving (us)
For 40 years Family Caregiver Alliance (FCA) has supported and sustained the important work of families and friends nationwide who care for adult loved ones with chronic, disabling health conditions. In the section Caregiving issues and strategies could be found the various tip-sheets relating to coping strategies for dementia carers.
ucla alzheimer's and dementia care program
This program is designed to help patients and their families with the complex medical, behavioural and social needs of Alzheimer's disease and other types of dementia. Family members may especially find as useful the caregiver training videos relating to different changes in behaviour among people living with dementia (see the link below).
caring-kind: the heart of alzheimer's caregiving
CaringKind is a community resource for Alzheimer’s and dementia care in New York City. They provide free comprehensive services that include a vast network of family caregiver support groups, education seminars, training programs, social work services and a wanderer’s safety program. Family Caregiver guide can be downloaded from the link below.
swedish dementia centre
This Swedish website is divided into six areas; About dementia, Living with dementia, Working with dementia, Research, Education and Publications. It contains new research findings, current university programs and courses as well as scales for diagnosis. Unfortunately, only the home page and the help-sheets are translated in English. The useful information in English for carers and family members can be found via the link below.
research institute for aging (ria) (canada)
This charitable foundation is dedicated to enhancing care and quality of life for older adults. The RIA develops and shares resources, services, education and training to support enhanced quality of life and care for older adults. The most useful link leads to a Guide for carers that includes many help-sheets relating to communication, changes in behaviour, safety issues, assistive technology (see the links below).
Alzheimer's society london and middlesex (uk)
The Alzheimer Society London and Middlesex (ASLM) offer a wide range of programs and services designed for individuals with dementia and/or memory concerns, their family, caregivers, and health professionals, as well as the general public. The section “For the care partner” is useful for carers and family members (see the link below).
dementia specific villages
There are debates around dementia specific villages – villages where those with dementia live, but cannot leave by themselves. The founder of Hogeweyk, a dementia village in Amsetrdam admits:
‘Of course when people want to move in, they want to leave. I think I would too, if I were locked up. But what I think is so lovely is you can go outside without someone watching or walking with you’[i].
Some see, that ‘it is a shame if we are willing to accept that the only way to really [care for those with dementia] is to segregate people and have them in environments that are so specifically focussed’[ii]
As you know from the content of this website – we do want to empower both carers and all of society to work towards becoming dementia friendly communities as a whole, and not just societies with segregated dementia communities. However we also see value in and respect these dementia villages and what they offer families and those with dementia.
These villages are not in Australia however, we have included them as food for thought.
[i] Boseley, S. 2019. ‘Eventually I knew she was no longer safe alone’: how do we care for family with dementia?’. The Guardian.
[ii] Dominc Carter, senior polocie officer for the UKs Alzheimer’s Society in: Boseley, S. 2019. ‘Eventually I knew she was no longer safe alone’: how do we care for family with dementia?’. The Guardian.
The founder, Jannette Spiering ran a conventional care home, but tore it down to build a dementia village. Its ‘fences’ are shops, cafés and a movie theatre. Residents live in group homes but are free to wander the village and the gardens. Alongside employed workers, the village is also manned by volunteers and members of the community are welcomed and encouraged to use the cafes, shops and movie theatre.
Harmonia village, dover uk
They do not have a website but here is a link to their pamphlet located on their facebook page. Here is a video that shows dementia advocates walking around the site to see what they think of the Harmonia dementia village model.
Some comments from these people that reveal a little of the philosophy behind the village:
‘We are trying to recreate a normal environment’, where there is a ‘front door in the house’ and, ‘if it’s raining, people can go and get wet’.
Websites/Reports Aimed at Residential Care but could be helpful
australian pain society
Pain in Residential Aged Care Facilities: Management Strategies, 2nd Edition
A 'one-stop-shop' for pain management in residential facilities.
dementia services development centre (Scotland)
DSDC is an international centre of knowledge and expertise dedicated to improving the lives of people with dementia. They draw on research and practice, from across the world, to provide a comprehensive, up-to-date resource on all aspects of dementia.