What is Dementia?
Dementia is an umbrella term for a collection of symptoms that are caused by disorders affecting the brain and impact on memory, thinking, behaviour and emotion. The most common is Alzheimer’s disease, which affects 50-60% of people with dementia. Other types of dementia include vascular dementia, Lewy body dementia and fronto-temporal dementia.
Dementia can also sometimes affect people who are under the age of 65. This is known as young onset dementia.
Our brains are made up of over 86 billion nerve cells – more than the stars in the Milky Way. Dementia damages nerve cells so they are no longer able to communicate effectively and this impacts on how our body functions.
The specific symptoms a person living with dementia experiences will depend upon what parts of the brain are affected and/or the specific disease that is causing their dementia. Symptoms may include:
- loss of memory
- difficulty in finding the right words or understanding what people are saying
- difficulty in performing previously routine tasks
- personality and mood changes
Although each person will experience dementia in their own way, eventually those affected will be unable to care for themselves and need help with all aspects of daily life. Dementia is the leading cause of disability and dependency among the elderly.
Dementia affects 50 million people worldwide, with a new case of dementia occurring somewhere in the world every 3 seconds. Dementia can also affect individuals under the age of 65 (young onset dementia). Greater awareness and understanding of dementia is important to challenge the myths and misconceptions that surround the condition.
There is currently no cure for most types of dementia, but treatment and support are available.
- Note: There are associated medical conditions under the dementia umbrella including Parkinson’s, Huntington’s, Vascular (stroke or heart disease), Korsakoff’s syndrome, Down Syndrome, Brian cancer, Brain injury.
- Video: https://www.nia.nih.gov/health/video-how-alzheimers-changes-brain
Pathway of dementia
A person experiences changes or the relative or employer notices these changes usually in memory loss, behaviour ( e.g. withdrawn) or thinking abilities. Sometimes the change can happen suddenly in the case of a stroke or be a result of other medical conditions like Parkinson’s or Down Syndrome.
Diagnosis and Medications: General Practitioner/Doctor: Referral to specialist such as a geriatrician, psychiatrist, neurologist.
Family/Friend Carer: As the person diagnosed with dementia becomes increasingly dependent on relatives or friends the “family carer” takes on more responsibility of care.
The family carer needs to seek support and take care of self as well. Carer organisations and government departments can help with information, education, counselling, payments and advocacy.
Records: It is helpful to keep a record or documentation in files for health; legal and finances. Include a list of the important contacts (use business cards) for planning and emergencies. Keep a journal of changes or questions to raise to staff.
Emergency: Have an emergency plan such as neighbours or friends to contact especially for after hours. Ensure that fire safety measures are put in place. If you have pets ensure that there is immediate care for them.
Legal Advice: As the person with dementia will lose mental capacity, it is important that they choose who can make decisions on their behalf. Enduring Power of Attorney and Wills need to be formalized early. Solicitors and organisations like Public Trustee are supportive with this advice. The choices allow the person with dementia to maintain their rights and dignity whilst giving the Enduring Power of Attorney clear instructions to follow.
Financial Advice: Look at income, Centrelink payments and assistance, changes to bank accounts, future planning for accommodation and entry into retirement villages and residential facilities.
In-home care support: Including domestic, shopping, meals, social support, bathing, transport, home modification, equipment and respite.
Respite : In-home respite, day respite, overnight or longer stay respite gives the family carer a break. Respite allows the person with dementia to gain benefits from socialization and activities. Family carers can gain from staff emotional support, referrals and advice on caring aspects like managing behaviour.
Allied care staff: Including physiotherapists, occupational therapists, modified and assistive technology support, psychologists (behaviour management), speech pathologists (swallowing difficulties), nursing specialists (incontinence), podiatrists, dentists, counsellors.
Hospitalization: For differing medical conditions or injuries such as from falls.
Permanent Care in a facility: Residential care or group home for young onset dementia for 24 hr nursing care.
End of life care: Palliative care. In residential facility, hospital palliative care unit, hospice, or person’s own home with palliative carer services support.
Funeral: Arrangements made early will alleviate stress for family members.
Post-Care: A family carer is considered “post-care” when the person with dementia enters full-time care, as the carer is not eligible for Centrelink carer assistance. Payments are still given for several weeks after entry. However, the family carer is still a carer although in different ways including monitoring care, advocating, providing clothes and toiletries, communicating to family members and staff, transporting to medical appointments and giving emotional support to the person with dementia.
When the person with dementia dies, the family carer is a “post-carer” and needs emotional support for grief and loss. Planning for post-care along the journey will support the family carer to cope.
Understanding the different stages of dementia: From Alzheimer’s Qld
As many of you know, dementia is a chronic syndrome that affects the brain, causing the progressive decline of a person’s cognition and abilities.
Dementia has a huge impact on daily life but because various parts of the brain are affected at separate times, people progress at a different rate to each other, meaning that no two people will have the exact same journey.
The below serves as a guide of what to expect with the condition over several timeframes and what the common symptoms are. The key thing to bear in mind is knowing that help is out there. From your GP to organisations like Alzheimer’s Queensland, there’s all sorts of services and support you can access to help make life a little easier.
Symptoms in early stage dementia generally last for between two and four years, and can present quite differently in each person. At some point during the early stage, people tend to seek out medical intervention and diagnosis, as well as organisations like Alzheimer’s Queensland which can offer huge emotional support.
Whilst it’s important that people maintain their independence in this time of change, they usually also consider both retirement and lifestyle changes to help manage their condition.
- Short term memory loss
- Loss of spontaneity and initiative
- Mood or personality changes
- Poor judgement
- Difficulty handling finances
- Inability in performing daily tasks to usual standards
- Apathy and withdrawal
The middle stage of dementia can last anywhere from two to 10 years. The changes people face during this period are challenging and can make them feel as if the world’s a confusing and frightening place. The role of carers in people’s lives becomes critical at this stage, as does the need for support services.
- Repetitive statements and movements
- Restlessness, especially in late afternoon
- Communication difficulties, particularly with word finding
- Problems reading and writing
- Deterioration in personal hygiene
- Development of new behaviours such as delusions, paranoia, suspiciousness, wandering or hoarding
- Difficulty recognising friends and newer family members
This unfortunate, and often distressing stage of dementia can last for between one and three years. A person with the condition may be unable to speak or walk and are likely to need full-time nursing care.
Although they may not engage with others easily, human contact, attention and touch are vital to a person with dementia – for both their wellbeing and quality of life.
- Inability to recognise family members
- Difficulty recognising self
- Little capacity for self-care
- Little or no verbal communication
- May put everything in mouth, or touch and fiddle with things
End of life
People can live for up to 20 years from when their dementia symptoms first begin but as their mental health deteriorates, so does their overall health and wellbeing.
Alzheimer’s specifically is known to cause a lowered immune system and often people experience major health issues as a result, including seizures, gastrointestinal bleeding, heart attacks or strokes. Common symptoms at the end of life stage are pneumonia, pain and/or fever – and death is due to multi-organ failure due to damage to the brain, preventing it from regulating bodily functions.
Help and support
Dementia is an insidious disease which can feel alienating and tough to tackle but remember you’re not alone.
If you’d like support or further information about dementia, please call our 24-hour Advice Line on 1800 639 331.
Words: Ash Anand
About Sunshine Coast Dementia Network
The SCDN was Initiated by OzCare, which had been funded by Home and Community Care (HACC) to establish dementia services around the state.
The SCDN in its infant stages focused on staff and service providers to come together and discuss the services and related referrals.
In late 2011, Vince and Lorrae O’Rourke (Carers Outlook) as members of the SCDN were asked to continue the facilitation in on ongoing capacity by Ozcare, Older Persons Mental Health social worker and Smadar an independent social worker.
The SCDN saw the need to create a Dementia Hub, Central Sunshine Coast and Hinterland at the CWA Hall, Nambour operating bi-monthly with speakers and a social gathering for people with dementia and their family carers and staff.
The opportunity to network in a co-operative non competitive atmosphere allows for familiarization of people and a fostering of trust to gain support and an avenue for referrals. It operates informally with discussions with services and individuals and creating realistic goals and outcomes.
The SC Dementia Network is not funded and it operates with the kind support from organisations and individuals. The organisation of events and presentations are voluntary. The volunteers, like Chrissy and Tracey help to create the events and the people at the registration desks, serving morning tea all makes the Network “work”.
Nursing Homes, (Opal Health and Estia Health), Bromilow, Suncare, Commonwealth Respite and Carelink Centre, Diversicare, New Staff Home Care and Unity Water via Nambour Chamber of Commerce supported the Dementia Hub with the hall hire and morning teas. Other organisations have provided lucky door prizes and paid for tables to display material at conferences like, Carinity Care, Aged Care Seeker, Blue Care, OzCare, Steps Training, MGA Insurance, Seasons. Nambour College, Mooloolaba TAFE, Southern Cross Care, Estia Health, Sanctuary Park gave their venue at no cost. The organisation of events and presentations are voluntary.
Organisations and Educational institutions have provided speakers at no cost – Dementia Training Australia, Alzheimer’s Qld, Dementia Support Australia, Dementia Australia, University of Sunshine Coast, Thompson Institute, LifeTec, University of Qld – Psychology, Driving study
Bromilow Community Care now named My Home Care by Bromilow provided the staff time and funds to create the SCDN website.
In 2021, the SCDN continues to operate with the voluntary facilitation from Vince and Lorrae O’Rourke who encourage the interaction and networking among people with dementia and their family carers and staff.
What has happened and continue to do in 2021.
Information and Support:
Dementia Information Days: held bi-monthly
Phone Contact List for Dementia and Care
Calendar of Events
Sunshine Coast Dementia Network website – Bromilow Community Care provided and designed the Website. Sarah form RangeCare is helping to maintain it.
Sunshine Coast Dementia Facebook page
Individual calls and referrals to organisations.
Support to other organisations: displays of their marketing material, e.g. I Age Well EXPO, advice on programmes, sitting on committees e.g. Healthy Ageing Partnership, Elder Abuse, Sunshine Coast Council Access
Urban Angels: free meals to people with dementia and carers. Catered for 2019 Conference.
The SCDN advocated for a Dementia specific Carers Support Group which Carers Qld operated the monthly SG for several years. Lorrae and Vince attended this Group to support the carers and Carers Qld facilitator, Janine Dowdell. Suncare started Dementia Cafes and Lorrae and Vince attended similarly to support the group. These groups have folded due to funding changes.
Due to sending a letter with resources to the SC Lord Mayor discussions opened about Council creating gardens and parklands for people with dementia. The Maroochy Botanical Gardens were to be developed with secure peaceful space for people with dementia and others with sensory impairment.
Catch-up Cuppa: 2021 Nambour, Maleny and Caloundra held bimonthly.
Facilitation by Lorrae, Vince, Chrissy, and Glennis.
Fun lucky door prizes and competitions e.g. Dementia Mechanical companion pets
Education and training:
Dementia and Technology at the Sanctuary Park Retirement Village
A seminar on Dementia – Abuse and Neglect at the Southern Cross RACF at Caloundra.
Seminars: 2017 and 2018 at Nambour College
Dementia Conference 2019 (120 attendees) and 2020 (80 attendees) at Mooloolaba TAFE
Workshop: Dementia and Compassionate Care at Estia Health, Nambour in partnership with Vicki Doolan, Gracefully Ageing.
September is Dementia Month:
Ecumenical service at Catholic Church and talk, Nambour and Maroochydore. Ecumenical service Churches of Christ, Nambour with Anglican Church Guild providing morning tea.
Talks on Dementia and Caring role for:
SC Council libraries: Nambour, Maleny, Caloundra, Kawana, Cooroy, Noosa, Maroochydore.
Support Groups: Carers Qld – Maleny, Beerwah, Caloundra, Noosa, Maroochydore. Suncare – Cotton Tree, Maroochydore; Parkinson’s – Nambour, Caloundra
Rotary Groups- Nambour 2 districts, Caboolture, Lions Nambour, Veterans Caloundra RSL, Mens Sheds- Buderim, Woombye, Glasshouse, View Club-Bribie Is, Older Women’s Network Gympie and its AGM, Meals of Wheels AGM Nambour,
Stall at: Festuri Multicultural Festival withy Carinty Care and Diversicare; SC Council Healthy Ageing Seminar
Carers Week.: Attended lunches. Included in SC Daily Newspaper article on carers needs.
Mental Health Week: Considering Mental Health of people with dementia and family carers. Grant form Qld Mental Health Week for Dementia Information Day event.
Movie showing at Sunshine Coast bcc Cinemas: Still Alice. Funded by Estia Health.
Radio interviews, Sunshine Coast Daily newspaper articles, Sunshine Valley Gazette, Local TV News coverage on Dementia Information Day (Technical Aids and Dementia and Driving) Local Facebook pages.
Seniors Week: SCDN Facilitators awarded Seniors Award at IAgeWell Awards. Interviews on local news. Helped to promote dementia and carers.
Flyers and information to medical centres, hospitals, shopping centre noticeboards.
Vince & Lorrae O’Rourke – Facilitators
Vince O’Rourke, author of I Wish I Were a Leper cared for his first wife who died from Young Onset Alzheimer’s disease. The book details his care for her at home & in a nursing home.
Lorrae Martin worked for Alzheimer’s Qld facilitating carer groups & education programmes around Qld and worked with many of the organisations involved in dementia and caring. She was the primary family carer for her aged mother who had Alzheimer’s & other illnesses. Pearl died in 2015 in a SC nursing home.
They met when Lorrae invited Vince to speak at a Conference at Toowoomba. He later spoke at other community events at Noosa, Nambour, and at Support Groups. They married on 1st January, 2010 and bought their home to share and care for family carers on 1st July, of the same year.
Carers Outlook opened its doors mid August, 2010 for an Ipswich carer and her friend. There have been over 450 carer respites from as far as Charleville and Mackay. Many have come from South Brisbane referred by the Carers Qld counsellor. Carer weekends for dementia, parents of adult children with intellectual disability, couples retreats from Bundaberg have been rewarding. They organised a seminar for Parkinson’s SC Support Group co-ordinators due to their working relationship with Suncare /Commonwealth Respite and Carelink Centre which funded the seminar and other workshops on the SC, Gladstone, Rockhampton and Yeppoon.
They have for years given talks for Medical and Psychology Students at Uni of Qld (St Lucia and Ipswich campus) and the Bundaberg Respite Centre.
Vince has Masters in Philosophy and Theology and speaks on the Spirituality of Caring and Dementia and spoken for Marist Brothers Past Mothers Assoc, Catholic Church Bundaberg and Nambour.
We would like to take the opportunity to say THANK YOU to ALL who have supported the Sunshine Coast Dementia Network. You have been part of its evolution to be an effective voice for people with dementia, their carers and staff.
The many willing hands make the will go stronger!
Please contact us if you need support or would like to contribute in some way to help those in the dementia world.