Dementia is a term used to describe symptoms that occur when there is a decline in brain function. This may include problems with memory, thinking, behaviour and the ability to perform daily tasks. If you're becoming increasingly forgetful, particularly if you're over the age of 65, it may be a good idea to talk to your GP about the early signs of dementia.
Dementia occurs as a result of damage to brain cells. The symptoms that develop depend on the areas of your brain that have been damaged. It is progressive, meaning the symptoms gradually get worse over time.
Dementia is more common in people over 65, but it is not a normal part of ageing. Māori and Pasifika people have higher rates of dementia than Pākehā. In te reo Māori, dementia is known as mate wareware.
Treatment depends on the symptoms, diagnosis and cause of the dementia. Medication cannot cure dementia or repair brain damage. However, it may improve symptoms or slow down the disease for a short period of time.
An early diagnosis can help you to get the most benefit from treatment. It also helps you to plan for the future and get the right support and advice.
What is dementia?
Dementia describes a group of related symptoms resulting from an ongoing decline of your brain.
It may include problems with:
As these symptoms progressively get worse, they can make it difficult for you to carry out your normal daily activities.
What are the different types of dementia?
There are a number of different types of dementia. The most common is Alzheimer’s disease, which affects about 60% of people with dementia. Other types of dementia are vascular dementia, dementia with Lewy bodies and fronto-temporal dementia. You may also be diagnosed with have ‘mixed’ dementia, eg, a mixture of Alzheimer’s disease and vascular dementia
Early onset dementia (or young onset dementia) describes dementia that occurs in people under 65 years of age. About 5% of people who develop dementia have early onset dementia.
What causes dementia?
Dementia is due to damage and eventual death of cells in the brain. This may be caused by injury, damage to your brain's blood vessels from diabetes, smoking or a stroke, or damage from toxins such as alcohol. Once cells die, they are not replaced.
Most dementia is not inherited. However, in rarer types of dementia there may be a strong genetic link, but these are only a tiny proportion of overall cases of dementia.
Who is at risk of getting dementia?
The older you are, the greater your chance of getting dementia. Most people are over 65 when diagnosed, although some younger people have early onset dementia.
There are some groups of people who are known to have a higher risk of developing dementia. These include people with:
Down syndrome or other learning disabilities
risk factors for cardiovascular disease (such as angina, heart attack, stroke and peripheral arterial disease)
a history of drinking excess alcohol
a family history of dementia
a history of a head injury
mental health conditions such as schizophrenia or severe depression
low physical activity levels.
What are the symptoms of dementia?
Dementia symptoms affect 3 main areas:
mood, personality and behaviour
So symptoms usually include forgetting things, repeating questions, not remembering appointments, forgetting people’s names, forgetting the names of objects, not being able to plan the steps to do everyday tasks such as making a meal.
How is dementia diagnosed?
If you or someone you care for are becoming increasingly forgetful, it may be a good idea to talk to your GP about the early signs of dementia. Your doctor will do some simple memory tests and refer you for further assessment if needed.
Getting an early diagnosis can be a great help. Knowing what is going on means you will be able to plan ahead and get the support you need.
What is the treatment for dementia?
Although there is no cure for dementia, there are a number of treatments, including:
cognitive stimulation therapy
treating heart risk factors
mind and memory-based activities.
There's no sure way to prevent dementia, but there are steps you can take that might help. Including the following in your day-to-day might be beneficial:
getting regular exercise
avoiding or reducing alcohol and other substance use
eating a healthy diet
getting enough sleep.
Treat 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.
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.
There are medicines that can help some people with the symptoms of forgetfulness and improve their ability to think more clearly in the earlier stages. Medicines do not cure dementia and they may only work for some people. The aims of treatment are to promote independence, maintain function and treat symptoms. These medicines fall into 2 categories:
cholinesterase inhibitors (such as donepezil, rivastigmine and galantamine)
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.
Your doctor will also review any other medicines you are taking to check that they are not contributing to any dementia-like symptoms.
Mind and memory-based activities
This could include:
cognitive rehabilitation, where a health professional helps you achieve a goal such as learning to use a mobile phone
life story work, where you use a scrapbook, photo album or electronic app to remember and record details of your life
music and creative arts therapies to keep your brain active and help you express your emotions
complementary therapies such as aromatherapy, massage or bright light stimulation – discuss these with your doctor beforehand
doing brain exercises and practicing memory strategies.
Cognitive stimulation therapy
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 mental and social functioning. The sessions actively engage people with dementia, 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.
Self-care for dementia
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 will help you work out whether it is safe for you to continue driving for now, and if not, how you will manage without driving. 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. [link to our page]
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 advanced care planning. [add link to our page]
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: 18 Nov 2019
Caring for someone with dementia can be intense, challenging and rewarding. Therefore, it is vital that you get informed about what to expect, learn about the support available and make sure you look after your own health and wellbeing.
Get as much information about dementia as possible. Knowledge takes away the fear of the unknown and it helps you know what to expect and what support is available.
Take part in education programmes provided for carers in many areas. This can help to boost your self-esteem, reduce your stress levels and increase your ability to cope. Contact your local Alzheimer’s NZ to see if carer education programmes are available in your area.
Establish a basic daily routine in the household and try to stick to it. Try to keep things as normal as possible and not treat the person with dementia like an invalid. It’s important to support them to be independent for as long as possible, doing tasks they can still carry out. This helps them retain some sense of dignity and usefulness.
Ask for help
It can be easy for carers to underestimate their own needs and not do anything about them, or simply not know where to turn for help. It may also seem hard to take time out for yourself, but it’s important that you do.
Seeking help early and using the support services available helps you to continue caring for your family member with dementia at home for longer. It is best not to wait until you are desperate or exhausted before you ask for help or an outside person or agency has to intervene because your situation has got to crisis point.
It’s important that you don’t try to manage alone. You are entitled to help from health professionals and social services. Your local Alzheimer’s NZ organization or GP can help you access them. Family, friends and neighbours may offer to help, so take up their offers. Think of ways to let them help with caring and explain exactly what you would like them to do.
Join a support group
A support group can be a great help for your well-being and support for you as a carer. There’s nothing like meeting with people who know exactly what you are going through. Contact your local Alzheimer’s organisation to find out details of support groups in your area. You don’t have to be the full-time carer to access these support groups – they are often open to friends, neighbours, children and siblings.
Your doctor is the first person to contact if you are concerned about the person in your care or yourself. Experienced carers suggest that you need to be assertive and persistent with doctors who aren't immediately helpful. When visiting the doctor make a list of things to talk about so the doctor has a clear indication of your problems. Keep in regular contact with your GP and/or specialists as needs will change over time.
Services such as day programmes, respite care and home help can be accessed after a person with dementia has been assessed by someone from their local Needs Assessment team. You can contact your local Needs Assessment and Service Coordination (NASC) service directly or you can be referred by your GP or local Alzheimer’s organisation.
Day programmes can have a two-fold benefit. They provide motivation and socialisation for people with dementia while providing respite for the carer. Day programmes are provided in different facilities; some will be designed especially for people with dementia, others will be shared with people without memory loss. Enquire about suitable day programmes by contacting your Needs Assessment and Service Coordination (NASC) team or local Alzheimer’s organisation.
It may be difficult to introduce the idea of going to a day programme to a person with dementia as they may not see the need to go and may prefer to remain at home. It can take time for a person with dementia to get used to a new environment and new people. Ask other people, such as your doctor, family and friends to provide encouragement and to reinforce the positive benefits. Attending a day programme may give you confidence that others can provide alternative care too. It may also prepare the person for their transition to residential care should the need arise. Begin by trying day care one day a week and increase this as the person gains confidence to attend.
Short-term care for a person with dementia is known as respite care and this can be provided in the community or in a residential care facility. If a person with dementia cannot be left alone, a sitter may be able to come and be with them while you go out. Contact your local Alzheimer’s organisation to see if this available in your area.
Use the time you have to yourself from day care, home care or respite to do something you want to do, rather than something you have to do. Meet up with friends, do your hobbies or just take the opportunity to have quality time to yourself.
Look after yourself
It is important that you stay physically and emotionally healthy.
Keep in touch with family and friends. You deserve and need a social life outside your carer role.
Take time out to maintain your interests and hobbies. You have a right to follow your own interests outside of the caring role, and it is important that you do so.
Find ways to relax. Some people find that time spent in prayer, meditation, self-reflection or counselling can help boost morale.
Keep moving. Walking is an excellent stress reliever and also calming for a person with dementia.
Try to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can.
Take regular breaks
Don’t feel guilty about taking time off. Looking after someone with dementia 24 hours a day can be exhausting. Plan to take regular breaks, eg, time each week to spend out of the caring role. These breaks may involve friends, family or outside agencies to allow you a rest for a few hours. The first few times may be difficult for both you and a person with dementia but it is often found that after a few times you will both become used to the routine.
Focus on what is still there
Your attitude can make a difference to the way you feel. Try to focus on the good things and try to not think about the things a person with dementia can no longer do. Try to make every day count as there can still be times that are special and rewarding.
You might find it easier to cope once you have adapted to taking one step at a time. Try to focus on what you are doing right now and don’t worry about what has been or what will be. Learning mindfulness can be helpful.
Note: Some resources on this page are from overseas so some details may be different. Make sure you know the emergency numbers for New Zealand. Ring 111 for emergencies, or if it is not an emergency, phone Healthline 0800 611 116.
From Auckland Regional HealthPathways, accessed October 2019
Diagnosis of dementia
Take comprehensive patient history, perform brief neurological exam and cognitive 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
Known date of onset
Yes, usually a sudden change
No, chronic and generally insidious
Yes, often coincides with life events
Short – days or weeks
Long – months to years
Deliriumwith or without dementia – manage delirium and exit this pathway. If you suspect coexisting dementia, reassess via this pathway once delirium resolved.
Depression with or without possible coexisting cognitive impairment – manage depression and exit this pathway. If you suspect coexisting dementia, reassess via this pathway once depression treated.
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.
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 all clinical 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 pilot Te Pou, NZ, 2014
This course is heavily informed by the Waitematā 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 to build 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
Professor Ngaire Kerse talks about living well with dementia. Ngaire is a GP in Auckland, Professor of General Practice and Primary Health Care and the Joyce Cook Chair in Ageing Well at the University of Auckland.
(Goodfellow podcast, 2020)
Key dementia-related organisations in New Zealand
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.
New Zealand 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 New Zealand 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.