Alzheimer's is the most common form of dementia – about two-thirds of people with dementia have Alzheimer’s.
It's likely to be caused by a combination of factors, including age, genes and environmental factors. Growing older is the most significant risk factor.
With more people living longer, Alzheimer's is becoming more common.
Symptoms usually develop slowly and get worse over time.
While there is no cure for Alzheimer's disease, a combination of drug therapy, lifestyle changes and behavioural treatment may help with symptoms but will not stop the process of decline.
(Alzheimer's NZ, 2016)
What is Alzheimer’s disease?
Alzheimer’s disease is a form of dementia – a general term used to describe symptoms that occur when there is a decline in brain function. Dementia may include problems with memory, thinking, behaviour and the ability to perform daily tasks.
Symptoms of Alzheimer’s are due to physical changes in your brain, including shrinkage and a build-up of abnormal proteins (plaques and tangles). Tangles lead to the death of brain cells. These changes are associated with a shortage of some important chemicals needed for sending messages around your brain.
Alzheimer's is a progressive disease, which means that gradually, over time, more parts of your brain are damaged. As this happens, the symptoms become more severe.
What causes Alzheimer’s disease?
It's likely that a combination of factors, including age, genes inheritance and environmental factors are responsible.
Age: This is the greatest risk factor for dementia. Dementia affects about 1 in 20 people over the age of 65 and 1 in 5 over the age of 80. About two-thirds of these will have dementia caused by Alzheimer's disease. However, younger people can also get early-onset dementia, about half of whom will have Alzheimer's disease.
Genetic inheritance: A number of genes have been identified that increase the risk of developing the condition. The chance of developing Alzheimer's disease is greater if you have a parent or sibling with the condition. However, very few families have a direct inheritance of the condition from one generation to the next, and where they do, it usually appears early in life.
Environmental factors: People with an increased risk of developing Alzheimer's disease include those who:
While there are some common symptoms of Alzheimer's disease, everyone is unique. No two cases of Alzheimer's are likely to be the same. People in the early stages of Alzheimer's disease experience lapses of short-term memory. As the disease progresses they may:
have increasing difficulty managing complex or new tasks
frequently forget the names of people, places, appointments and recent events
show a lack of initiative or withdrawal from usual activities
experience emotional and personality changes, such as frustration, anxiety or sadness
become more irritable, suspicious or emotionally unresponsive in the face of their increasing disability
have problems finding the right words or understanding what is said to them.
How is Alzheimer’s disease diagnosed?
If you are concerned you or someone close to you may have symptoms of Alzheimer's disease or dementia, it is a good idea to see your doctor. An early diagnosis will:
help you plan for the future
enable you to benefit from the treatments available
help you identify and access early sources of advice and support.
There is no straightforward test for Alzheimer’s. A diagnosis is usually made by excluding other possibilities such as depression, delirium, thyroid problems, side effects of medicines, vitamin deficiencies or a brain tumour.
Most people with Alzheimer's also have arterial disease of the brain (cerebrovascular disease or CVD), and their diagnosis is mixed dementia (ie, Alzheimer's and cerebrovascular disease).
Your GP may ask a specialist for help in establishing a diagnosis.
Tests for Alzheimer's often include:
blood tests and a full physical examination to rule out or identify any other medical problems
a cognitive and memory assessment of a range of brain functions including memory, thinking and language skills
Lifestyle factors can affect dementia risk and by changing those, you may be able to slow your cognitive decline. Factors to consider include:
getting regular exercise
avoiding or reducing alcohol and other substance use
eating a healthy diet
getting enough sleep.
It may also be useful to do brain exercises and practice memory strategies. Read more about healthy living.
Cognitive stimulation therapy
In some regions, there is the option of cognitive stimulation therapy (CST). This is a structured group treatment developed for people with mild to moderate dementia. It consists of 14 sessions with a range of activities and discussions aimed at general enhancement of cognitive and social functioning. The sessions actively engage people with dementia, while providing an optimal learning environment, and the social benefits of being part of a group. CST has been found to be an acceptable psychological therapy for older people with a clinical diagnosis of mild to moderate dementia. Some rest homes and private hospitals also run similar programmes to CST.
Heart risk factors
Management of heart risk factors may benefit all types of dementia. Generally, what is good for your heart is good for your brain. Read about heart risk assessment.
Medication
There are medications that can help some people with the symptoms of forgetfulness and confusion in earlier stages. These medicines fall into 2 categories:
These work by enhancing the levels of a chemical in the brain (called acetylcholine) that is involved in memory and judgment. Read more about medicines for dementia.
However, a number of drug treatments are available that can help with some of the symptoms or hold back progression of the disease (on average, by 6–12 months) in some people.
Acetylcholinesterase inhibitors are one such group and include the following:
Donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl).
These drugs work by boosting existing supplies of acetylcholine.
People with Alzheimer's have been shown to have a shortage of the chemical acetylcholine in their brains.
These drugs are mainly helpful for people with mild or moderate Alzheimer's disease.
Side effects may include reduced appetite, nausea, indigestion, diarrhoea, fatigue, sleep disturbances, incontinence of urine and slowing of the heart rate.
Only some are currently subsidised in New Zealand.
Rivastigmine is available in a once-a-day patch as well as the tablet form, and the patch may have benefits for some patients with mild to moderate Alzheimer's disease.
NMDA receptor antagonists
An NMDA receptor antagonist drug, memantine (Ebixa), is also available in New Zealand.
This drug works in a different way to the other three – it prevents the excess entry of calcium ions into brain cells.
Excess calcium in the brain cells damages them and prevents them from receiving messages from other brain cells.
Memantine is promoted as having benefit in more advanced cases of Alzheimer's disease.
Side effects may include hallucinations, confusion, dizziness, headaches and tiredness.
Self-care for Alzheimer's disease
Care planning meeting
Plan ahead so that you have more say in your future. Arrange a meeting (or get someone else to do it) with all the people involved in your care. This may include your carer, family/whānau members, or your practice nurse or GP.
Agree on a care plan to support you to stay as well as possible for as long as possible. This might include:
having a driving assessment
arranging enduring power of attorney
writing or updating your will
developing an advance care plan
accessing services to help you stay independent for as long as possible
learning about your condition.
Having a driving assessment
Driving requires quick reflexes and decision making. Having a driving assessment helps you work out whether it is safe for you to continue driving for now, and if not, how you will manage without driving. The AA driving tests are not sufficient for this purpose so you would need to pay for a private medical driver assessment through services such as through OTRS rehabilitation services. Read more about dementia and driving.
Arranging enduring power of attorney
Having an Enduring Power of Attorney (EPA) means you can have peace of mind that you have decided, ahead of time, who you trust to make decisions for you if you can’t decide for yourself. Read more about enduring power of attorney.
Writing or updating your will
A will sets out your wishes in terms of who to leave your possessions and money to and states who you would like to carry out your wishes. It can include special instructions for a funeral. If you don’t have a will, it could also put your family into legal and financial difficulties. Learn more about making a will.
Developing an advance care plan
An advance care plan is a way to record your wishes in terms of current and future medical care. It is an ongoing process of talking with those closest to you and getting information to help you make decisions about your care. It can include end of life planning. Read more about advance care planning.
Accessing services
Find out about services early on that can help you and help your carer to support you. Start with a free half-hour consultation with the Public Trust. This is available to existing and newly diagnosed dementia patients, their families and supporters. Freephone 0800 156 015 to book.
Learning about dementia can help you plan for the future as well as stay independent for as long as possible. See these resources and videos and other links under Learn more below.
Dr Helen Kenealy is a geriatrician and general physician working at Counties Manukau DHB. She has a broad range of interests and has worked in a variety of settings including inpatient rehabilitation, orthgeriatrics and community geriatrics.
Credits: Health Navigator Editorial Team . Reviewed By: Dr Helen Kenealy, geriatrician and general physician, CMDHB
Last reviewed: 07 Oct 2019
These personal stories reveal the challenges that come with Alzheimer's disease, not just for the individual but for family too.
Living well with dementia – Rita's story
(Alzheimers NZ, 2018)
Living well with dementia – Helen's story
(Alzheimers, NZ, 2018)
Together apart
Filmmaker, Suzi Jowsey, bravely follows her own family’s tough journey of caring for their mum who has Alzheimer’s.
(AttitudeLive, NZ, 2015)
A message for patients & their families
This video talks about getting support and things you should consider if you or a family member are diagnosed with Alzheimer's disease.
(About Alzheimer's, US, 2010)
The penny drops – Tania’s story
(Alzheimer's NZ, NZ, 2016)
Yep, my dad has dementia – Victoria’s story
(Alzheimer's NZ, NZ, 2019)
Is it me or the disease?
Does it seem like the person you know with Alzheimer’s is changing? You’re right! Watch this video to find out more about those changes and how to talk about them with friends and family.
(The Alzheimers Association, US, 2011)
How can I help & what's out there to help me?
There are many ways children and teenagers can make a difference in the lives of those with Alzheimer's disease and their families. Watch this video to find out what you can do to help.
(The Alzheimers Association, US, 2011)
If the person with Alzheimer’s lives with us what can I expect?
It may seem like the person with Alzheimer's is changing in ways that make your relationship different, but why? The answer is almost always that the disease is responsible for the changes, and keeping that in mind will allow you to cope with the situation more easily. Watch this video to learn more, and to explore making some changes of your own.
(The Alzheimers Association, US, 2011)
How can I help & what is out there to help me?
There are many ways people your age can make a difference in the lives of those with Alzheimer's disease and their families. Start by talking openly about it and informing your peers. Watch this video to find out how you can help move us toward a world without Alzheimer's.
(The Alzheimers Association, US, 2011)
Resources
Note: Some resources on this page are from overseas so some details may be different. In New Zealand, phone 111 for emergencies, or if it is not an emergency, phone Healthline 0800 611 116.
Note: This resource is from overseas so some details may be different in New Zealand, eg, phone 111 for emergencies or, if it’s not an emergency, freephone Healthline 0800 611 116
Note: This resource is from overseas so some details may be different in New Zealand, eg, phone 111 for emergencies or, if it’s not an emergency, freephone Healthline 0800 611 116
Note: This resource is from overseas so some details may be different in New Zealand, eg, phone 111 for emergencies or, if it’s not an emergency, freephone Healthline 0800 611 116
Note: This resource is from overseas so some details may be different in New Zealand, eg, phone 111 for emergencies or, if it’s not an emergency, freephone Healthline 0800 611 116
Note: This resource is from overseas so some details may be different in New Zealand, eg, phone 111 for emergencies or, if it’s not an emergency, freephone Healthline 0800 611 116
Information for healthcare providers on Alzheimer's disease
The content on this page will be of most use to clinicians, such as nurses, doctors, pharmacists, specialists and other healthcare providers.
From Auckland Regional HealthPathways accessed October 2019:
Diagnosis
Take comprehensive patient history, perform brief neurological exam andcognitive screen and decide on the most likely diagnosis. Delirium and depression commonly co-exist with dementia. If this is a possibility, treat these first and then re-assess for cognitive impairment.
Predominant presentation – delirium, dementia or depression
Feature
Delirium
Dementia
Depression
Known date of onset
Yes, usually a sudden change
No, chronic and generally insidious
Yes, often coincides with life events
Duration
Short – days or weeks
Long – months to years
Intermediate
Progression
Rapid
Slow
Variable
Deliriumwith or without dementia – manage delirium and exit this pathway. If you suspect coexisting dementia, reassess via this pathway once delirium resolved.
Depressionwith or without possible coexisting cognitive impairment – manage depression and exit this pathway. If you suspect coexisting dementia, reassess via this pathway once depression treated.
The Montreal Cognitive Assessment (MoCA) test will no longer be available for access without cost from 1 September 2020.
Its replacement, the Mini-Addenbrooke’s Cognitive Examination (Mini-ACE), is free, easy to use and takes about 5 minutes to complete. Mini-ACE training is available. For details about access to training seeNew Zealand Dementia Foundation – introducing the Mini-ACE.
SeeAuckland Regional HealthPathwaysfor further information on cognitive impairment investigations. All assessment forms are readily available as key links at the top of the pathway. Also, there is further information on follow-up consultation and management as well as onstarting Cholinesterase Inhibitors (CHEIs).
If you are referring a person with cognitive and/or memory impairment please note the details of the Enduring Power of Attorney (EPOA), family or support person in the referral. This is to ensure that any correspondence is sent to the most appropriate person.
Degree of impairment will determine management. In early stages or uncertain diagnosis, include lifestyle advice, patient information, review medication and treat cardiovascular risk factors. Review in 6 months (uncertain diagnosis/clinical concern) or 12 months (mild cognitive impairment).
Typical dementia – include care planning, EPA, ACP, driving assessment.
See more details at Auckland Regional HealthPathways.
Māori people with dementia (mate wareware)
Māori are 8.5 and 3.3 years younger than Pākehā and Pasifika, respectively when they are diagnosed. Māori understandings of mate wareware differ from the main Western conceptions of dementia. Whānau are generally inclusive of their whānau member’s changes in their daily functioning and new emerging behaviours. Whānau are crucial for the care of a kaumātua (older person) with mate wareware, so they need to be included in treatment discussions and decisions, along with the person with mate wareware.
Te oranga wairua (spiritual wellbeing) has been identified as central to Māori thinking about health, and effective care for someone with mate warewaremust therefore include cultural practices to strengthen wairua of the whole whānau.
Dementia and driving guidelines summary recommendations
World Alzheimer report 2014
Regional HealthPathways NZ
Access to the following regional pathways is localised for each region and access is limited to health providers. If you do not know the login details, contact your DHB or PHO for more information:
As health clinicians we are under an obligation to consider the driving safety of our patients and to deal with any risk to themselves or others from unsafe driving, especially in those who suffer from mild cognitive impairment (MCI) or dementia. However, the decision as to whether a person with dementia is fit to drive is complex, and often traumatic for the person with dementia. This guideline was developed in the Northern Region to assist allclinical staff in assessing the driving safety of a person who wish to continue driving in the context of having cognitive impairment.
Cognitive stimulation therapy (CST) is a structured group treatment developed for people with mild to moderate dementia. It consists of 14 sessions with a range of activities and discussions aimed at general enhancement of cognitive and social functioning. The sessions actively engage people with dementia, while providing an optimal learning environment, and the social benefits of being part of a group. CST has been found to be an acceptable psychological therapy for older people with a clinical diagnosis of mild to moderate dementia.Cognitive stimulation therapy – a New Zealand pilotTe Pou, NZ, 2014
This course is heavily informed by the Waitemata DHB pilot of GPs and practice nurses assessing, diagnosing and managing mild cognitive impairment (MCI) and typical dementia.
Dementia requires chronic care management. There is strong evidence that primary care is the right place for its assessment, diagnosis, and management.
This resource distils the literature and provides the evidence that informs Cognitive Impairment Pathways used across New Zealand. It is designed tobuild primary care confidence, competence, and consistency in assessing, diagnosing, and managing MCI and typical dementia.
This course cites Northern Region pathways, however, links to Cognitive Impairment Pathways used in each district health board across NZ are provided.
Dr Alan Davis, clinical director health of older people and clinical support at Northland District Health Board and clinical lead for the Northern Region health of older people network: Computerised decision support and dementia
Dr Richard Worrall, clinical director for mental health of older people at Auckland District Health Board: The ADHB dementia network
Dementia Learning Centre Alzheimers NZ Caring for someone living with dementia can be extremely stressful and challenging, both mentally and physically. Now, a unique online Caring for the Carers programme aims to help care partners take better care of themselves – and the person for whom they are caring. The programme has a range of tips, resources and advice around mental and physical wellbeing, rest and relaxation, diet and lifestyle to ensure carer partners can better deal with the stresses of their role.
Pharmac seminars
1. Early screening and assessment in primary care (30 minutes) Rebecca Casey
(PHARMAC, NZ, 2017)
2. Managing dementia, the next steps (31 minutes + 28 minutes = 59 minutes) Dr Jan Gregson
The three dementia-specific NGOs (or non-governmental organisations) are:
Dementia New Zealand
Dementia New Zealand’s member organisations provide support and education services to about 70% of New Zealand’s population affected by dementia, particularly in our larger cities, from Christchurch to Auckland. They are a key national voice to develop and promote better services to help people live well with dementia.
Alzheimer's New Zealand
Alzheimer’s New Zealand’s national office in Wellington has a respected history of working to educate and support government and other organisations to give the right priority and the right support to people living with all kinds of dementia and their whānau/families. Its member organisations provide grassroots support and education to about 30% of New Zealand’s population affected by dementia, particularly in our key regional areas, from Invercargill to Whangarei.
NZ Dementia Cooperative
New Zealand Dementia Cooperative exists to support the dementia workforce to do its job at its top potential – the health-care professionals, support workers, researchers, educators and managers who work with people affected by dementia. The Cooperative takes the voice of the workforce into every leadership meeting we attend and bring messages from the sector’s governance back to you.
The key players from the public health sector are:
The Ministry of Health
The Ministry provides overarching leadership to the whole dementia sector, setting the policy and goals and monitoring the outcomes.
District health boards
The DHBs fund all publicly funded dementia services, and include their key managers of health of older persons and mental health services, and their specialist services.
The NZ Dementia Framework Collaborative
This group of Health of Older People leaders from all four DHB health regions of the country (Northern, Mid-central, Central and Southern) is active in encouraging and ensuring there is a coordinated approach from the DHBs to put the aspirations of the “New Zealand Framework for Dementia Care” (2013) into action.
There are many other groups involved as well, including other key NGOs providing services, New Zealand’s Aged Residential Care and Home and Community Support Service providers, other cross-DHB committees such as the Mental Health of Older Persons Service Leaders Forum, professional interest groups such as the NZ Psychologists of Older People, and local Dementia Stakeholders groups in some DHBs and health regions.
