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. 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, Brain cancer, Brain injury.
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A person experiences changes or the relative or employer notices these changes usually in memory loss, behaviour ( e.g. withdrawn) or thinking abilities.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 a 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 people diagnosed with dementia will lose mental capacity, it is important that they choose who will make decisions on their behalf. Enduring Power of Attorney and Wills need to be formalized early. Solicitors and organisations like the Public Trustee are supportive with this advice. Documented choices and decisions allow people diagnosed with dementia to maintain their rights and dignity. By making these personal choices, the Enduring Power of Attorney is supported as they need only to follow the clear instructions (not make the choices).
Financial Advice: Look at income, Centrelink payments and assistance, changes to bank accounts, future planning for accommodation and entry into retirement villages and residential care facilities (nursing homes). Centrelink and Financial Planning organisations can assist.
In-home care support: Including domestic, shopping, meals, social support, bathing, transport, home modification, equipment and respite.
My Aged Care (for people older than 65 years of age) and National Disability Insurance Scheme, NDIS (for people younger than 65 years of age) provide information and financial support.
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:
Taken from Alzheimer’s Qld. Ash Anand
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, individual’s dementia progress at a different rate, 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 could be. Know that help is out there. From your GP to organisations like Alzheimer’s Queensland, Dementia Australia, Dementia Support Australia and the Dementia Network Sunshine Coast, there’s all sorts of services and support you can access to help make life easier.
Early-stage dementia
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.
Common symptoms
- Short term memory loss
- Confusion
- 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
Mid-stage dementia
The middle stage of dementia can last anywhere from two to ten 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.
Common symptoms
- 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
Late-stage dementia
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.
Common symptoms
- 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
- Incontinence
- Swallowing and eating difficulties
End-of-life
People can live for many years, even up to twenty years, from when their dementia symptoms first begin but as their brain 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 may be 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 Alzheimer’s Queensland 24-hour Advice Line on 1800 639 331.