What is dementia?
Dementia is a term that covers a number of diseases that occur as a result of physical changes in the structure of the brain. These changes are caused by specific conditions, and result in impairment of memory, thinking and skills, sometimes accompanied by altered emotional expression and sensory perception. Dementia is almost always progressive, which means the symptoms will gradually get worse.
Alzheimer's disease is the most common form of dementia, affecting approximately 20,000 to 28,500 New Zealanders (there is currently an estimated 40,746 New Zealanders with some form of dementia). It is a progressive disease of the brain in which cells are damaged and may die without being replaced. It results in impaired memory, thinking and behaviour.
having increasing difficulty managing complex or new tasks
- showing lack of initiative or withdrawal from usual activities
- emotional and personality changes
- having problems finding the right words or understanding what is being said to them
No one single factor has been identified as a cause for Alzheimer's disease, and it is likely that a combination of factors, including age, genetic inheritance and environmental factors are involved. It is common for people of all ages to experience forgetfulness. Forgetfulness is not being able to remember something at a specific time but the memory returns at some later time in most cases. This kind of forgetfulness is not cause for alarm.
Common signs of dementia:
- Recent memory loss that affects job skills
- Difficulty performing familiar tasks
- Problems with language
- Time and place disorientation
- Problems keeping track of things
- Repeatedly misplacing things and putting them in inappropriate places
- Changes in mood
- Personality changes
- Loss of initiative
If you are worried about your memory you should see your GP. There are many treatable causes of memory loss. If the memory loss is caused by dementia an early diagnosis is critical for planning and treatment.
You can also contact organisations such as the Alzheimer's Society, ADARDS Society or your local community health or healthcare centre for assistance for the person affected, and also their family and friends. It is a particularly tragic disease which may profoundly change the lives of those close to the person with Dementia. Support for all concerned is available and can include practical help in the home, carer relief and daycare for social interaction for the person with Dementia.
Unfortunately many people are still unaware of Dementia and its far reaching effects - Alzheimer's NZ hopes to raise awareness and change society's views about the disease. The Alzheimers NZ site has very useful information on this topic and a list of links to other similar organisations.
Alzheimers New Zealand publications
Women and Dementia: a global research review
This important and timely report reveals the disproportionate impact dementia has on women - most people living with dementia are women and women are more at risk of developing dementia than men; women are more likely to be the primary caregiver in a family situation involving dementia affecting their health, social relationships and financial security; and women are also most likely to be the provider of formal care in the community and in hospitals and care homes where low status, poor salary and inadequate training affects them, their family and people living with dementia. The summary version of the report is available here.
Booklets and factsheets
Knowing what to expect can help everyone prepare for what is coming, and knowing about what support and services are available is key to living well with dementia.
Alzheimers New Zealand has a series of booklets available on their website that provide a comprehensive resource specifically tailored for a New Zealand audience. They are based on the latest insights and research.
- About dementia
- Living well with dementia
- Supporting a person with dementia
- Understanding changed behaviour
- The later stages of dementia and end of life care
For more information and to download the books visit alzheimers.org.nz
Improving the lives of people with dementia
This 2014 publication outlines nine key areas the Ministry of Health will support over the next three years to maximise the health, independence and wellbeing of people with dementia.
Good health is essential for the social and economic wellbeing of New Zealanders. As the population of older people grows, so too will the population of people with dementia. An ageing population means that maximising the health, independence and wellbeing of people with dementia is a key part of ensuring the good health of New Zealanders. For more information and to download a pdf copy visit the Ministry of Health website.
THE DISREMEMBERED - Where Does Identity Go Once Memory Falters?
By Charles Leadbeater.
This article explores the nature of identity and looks at the issues faced by people living with dementia. Dementia undermines all of our philosophical assumptions about the coherence of the self and raises deeply troubling issues about our obligations to care for people whose identity might have changed in the most disturbing ways. In turn, those changes challenge us to confront our philosophical and ethical assumptions about what makes up that identity in the first place. Everyone touched by the disease goes through a crash-course in the philosophy of mind. Philosophy is not of much practical use with most illnesses but in the case of dementia it provides insights about selfhood and identity that can help us make sense of the condition and our own reactions to it. You can access this article at http://aeon.co/magazine/psychology/where-does-identity-go-once-memory-falters-in-dementia/
Understanding and Respecting Customers With Dementia - A Guide for Staff 2014.
Alzheimers Wellington published a resource Understanding and Respecting Customers With Dementia - A Guide for Staff 2014. http://ndc.hiirc.org.nz/page/49963/understanding-and-respecting-customers-with/?contentType=1585&tab=4891§ion=19790 This guide is adapted with the permission of the original document's creators: Hampshire County Council, Innovations in Dementia and the Local Government Association, UK. It is free for everyone to use as long as they acknowledge the original source. For more information on the full initiative visit: http://www3.hants.gov.uk/adult-services/adultservices-professionals/dementia/dementia-friendly-toolkit.htm
Finding a Path for the Cure for Dementia: An independent report into an integrated approach to dementia research "This report looks at the bigger picture of an integrated approach to the process, from dementia research through to drug development." Source: UK Government
My Future Wishes: Advance Care Planning for People with Dementia in all care settings
This document aims to assist practitioners, providers and health and social care commissioners create opportunities for people living with dementia to develop an Advance Care Plan (ACP). Source: NHS England
Cognitive Aging: Progress in Understanding and Opportunities for Action 11 "Cognitive Aging assesses the public health dimensions of cognitive aging with an emphasis on definitions and terminology, epidemiology and surveillance, prevention and intervention, education of health professionals, and public awareness and education. This report makes specific recommendations for individuals to reduce the risks of cognitive decline with aging. Aging is inevitable, but there are actions that can be taken by individuals, families, communities, and society that may help to prevent or ameliorate the impact of aging on the brain, understand more about its impact, and help older adults live more fully and independent lives. Cognitive aging is not just an individual or a family or a health care system challenge. It is an issue that affects the fabric of society and requires actions by many and varied stakeholders." Source: Institute of Medicine *sign up for free account to download
The 2016 World Alzheimer Report
The 2016 World Alzheimer Report warns that countries like New Zealand are unprepared for a surge in dementia cases and need to take urgent action to deal with the issue. Read the full report (pdf)
50 Facts - interesting statistics and research findings about Alzheimers
Some 46.8 million people worldwide are living with dementia today, a figure that is expected to increase almost three-fold in the next 35 years. If you're a woman, you're twice as likely as your male partner to succumb.
Blue Bird Care have developed a fantastic infographic to better help us understand Alzheimer's - you can download it here.
"People tend to put everybody into one big pile and say, 'Oh, he's got dementia' and they pull away. They don't want to know" says Alan. He's living with dementia in Auckland and unfortunately has experienced some stigma. You can hear more of his story in Dementia Commitment, a free online course to raise awareness of dementia. Dementia Commitment is a free, online, 20 minute course. It explains what dementia is and how it can affect people.