Dementia is a general term used to describe a decline in mental functioning to the point that it impairs a person's ability to carry out daily tasks.
Dementia is a term to describe a group of related symptoms that is associated with an ongoing decline of the brain and its abilities. It includes:
These usually develop and worsens slowly over time.
There are a number of different types of dementia. The most common – affecting about 60% of people with dementia – is Alzheimers disease. Treatment options depend on the diagnosis and cause of the dementia.
Medications cannot cure dementia or repair brain damage. However, they may improve symptoms or slow down the disease for a short period of time.
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.
There are many causes and diseases leading to dementia including Alzheimer's disease, Huntington's disease, damage to the brain's blood vessels from diabetes, smoking, or a stroke and damage from toxins such as alcohol.
Early onset dementia
Early onset dementia (or young onset dementia) is the term used to describe dementia that occurs in people under 65 years of age. It is estimated that 5% of people who develop dementia will have early onset.
People with early onset dementia and their families / carers often face significant changes to their financial situation. They may still be in full employment and have dependent others, a young family, and financial obligations such as home ownership.
Later, ongoing employment may become an issue and this can lead to financial hardship for significant others, and family may have to leave work themselves to provide care and to manage financial and legal matters. However, ensuring that people are supported to be as independent as possible for as long as possible is very important.
While remembering people's names and forgetting something from time to time is a normal part of ageing, forgetting how to carry out daily tasks is not. If you or someone else is concerned about your memory, it‘s important to see your GP.
There are many causes of forgetfulness or memory loss that are treatable such as stress, depression, diabetes or side effects of medication.
See your family doctor and they can do some simple memory tests and refer you for further assessment if needed.
If memory loss is due to dementia it is important to get an early diagnosis.
An early diagnosis of dementia can help you to get the best benefit from current treatments that are available.
It will also help you to plan for the future and get the right support and advice. (Based on advice from Ministry of Health dementia webpage)
Treatment for dementia
Although there is no cure for dementia, there are now medications that can help some people with the symptoms of forgetfulness and confusion in earlier stages. These medicines fall into 2 categories:
cholinesterase inhibitors (such as donepezil, rivastigmine and galantamine)
They all 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.
Driving and dementia
Driving requires quick reflexes and decision-making. While most people voluntarily stop driving following a dementia diagnosis, some don’t. However, as dementia progresses, there will come a time when driving is unsafe and not possible due to impaired thinking and reaction times. Read more about dementia and driving.
If you or a loved one has dementia, there are a wide range of support organisations and services who are there to help you. A good time to find out about these is in the early stages so the person with dementia can talk about what is important to them and help plan for the future.
If you are looking after someone with dementia, make sure you get support for yourself. There are also many practical tips and ideas you can learn from others who really understand.
Enduring power of attorney
An information campaign was launched in late June 2014 which aims to encourage people to protect their futures by setting up and enduring power of attorney. Information and brochures are now available at the Ministry of Social Development website or at your local Citizens Advice Bureau, public libraries, Community Law Centres and Age Concern offices.
Westpac in conjunction with Alzheimer’s Auckland is training staff to help recognize, understand and respond to the needs of customers living with dementia and their carers.
The purpose of the move, which includes training, building accreditation and financial services such as money management classes, is so that people with dementia can plan ahead, access financial services and get help to remain independent for as long as possible.
Credits: Sue Thomson, Northern Regional Dementia Behavioural Support and Advisory Coordinator, July 2015.
Caring for someone with dementia can be an intensive, challenging and rewarding experience. It requires time and energy and can be a hard and demanding task.
Therefore, it is vital that as a carer you look after your own health and wellbeing. When you are caring for someone with dementia it is often hard to see how you could take time out for yourself. This topic looks at ways to help you, the carer, in your caring role.
Get as much information about dementia as possible. Knowledge takes away the fear of the unknown and it helps to know what to expect and what support is available.
You may also decide to take part in the education programmes that are provided for carers in many areas. Being trained in the different approaches to the caring role can help to boost your self-esteem, significantly reduce your stress levels and increase your ability to cope. Contact your local Alzheimers organisation and enquire if carer education programmes are available in your area.
Enduring Power of Attorney (EPA)
The Minister for Senior Citizens Jo Goodhew has launched an information campaign encouraging people to protect their futures by establishing an enduring power of attorney. Information has been developed and provided to assist people with dementia, their carers, as well as legal and health professionals.
Establish a basic daily routine in the household and try to stick to it. Try to keep things as normal as possible; try not to treat the person like an invalid. It is important to retain a person with dementia’s ability to carry on independently for as long as possible. This will help them retain some sense of dignity and usefulness. Encourage the person to use remaining skills to carry on with tasks they are still able to achieve.
Ask for help
It can be easy for carers to underestimate their needs or fail to do anything about them or they simply don’t know where to turn for help. Seeking help early and using the support services available will enable you to continue caring 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 is important that you do not try to manage alone. You are entitled to help from health professionals and social services and your local Alzheimers organization or GP can help you access them. Family, friends and neighbours may offer to help. They really mean it, so take up their offers. Think of ways to let them help with caring and explain exactly what you would like them to do. Be open with your family, friends, and neighbours and tell them the truth. Be clear and open about your expectations of family members.
For many involved in caring, a support group is a great help. These groups can maintain your well-being and support you in your role as a carer. There’s nothing like meeting with people who know exactly what you are going through. Contact your local Alzheimers 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 you should 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 that are difficult or bothering you 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 service directly or you can be referred by your GP or local Alzheimers 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 team or local Alzheimers 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 daycare one day a week and increase this as the person gains confidence to attend.
Your local DHB will contract dementia day care services within your area - please ask your local Needs Assesment Service to provide you with this information in regards to access and availability.
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 the person while you go out. Some Alzheimers organizations provide sitter services; contact your local 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. Take the time to meet up with friends, do your hobbies or just take the opportunity to have quality time to yourself.
Carers: look after yourselves
It is important that you stay physically and emotionally healthy.
Eat a healthy, balanced diet – plenty of fresh vegetables and fruits; avoid large amounts of highly processed or high-calorie food; take alcohol in moderation.
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. It is important that you still continue with the activities you enjoy. 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. Walking is an excellent stress relief and also very calming for a person with dementia. Try gardening to lift your mood and relieve nervous tension.
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, ie, sometime 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.
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.
Take things one step at a time
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. Try to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can.
Medicines for dementia
Although there is no cure for dementia, there are now medicines that can help some people with the symptoms of forgetfulness and confusion in earlier stages. They work by enhancing the levels of a chemical in the brain, called acetylcholine, that is involved in memory and judgment. The medicines fall into 2 categories:
cholinesterase inhibitors (such as donepezil, rivastigmine and galantamine)
Examples include donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Reminyl®).
They are used mainly for Alzheimer's disease, but may also be prescribed for other dementias, including vascular dementia, Parkinson's disease dementia and Lewy Body dementia.
These 3 medicines are similarly effective in treating the symptoms of Alzheimer’s disease, and generally have similar side effects. There is no evidence that one medication is better than the other. The choice of medication is usually based on cost, formulation and side effects:
Only some of cholinesterase inhibitors are funded in New Zealand, so cost is an important factor in choosing a cholinesterase inhibitor.
All the cholinesterase inhibitors are available as tablets,, but rivastigmine is also available as a patch that is applied to the skin daily.
Common side effects
The common side effects of cholinesterase inhibitors are:
nausea (feeling sick)
diarrhoea (runny poos)
vomiting (being sick)
lack of appetite
dizziness and feeling faint.
If you feel faint or notice a skin rash, or are vomiting, contact your doctor. Do not drive if this medicine causes drowsiness.
Memantine (Ebixa®) is a used to treat moderate to severe Alzheimer's disease and may also help with mild to moderate vascular dementia. It has similar effects to the acetylcholinesterase inhibitors. It is available as a tablet and is currently not funded in New Zealand.
Common side effects
The common side effects of memantine are flu-like symptoms such as:
Do not drive if this medicine causes drowsiness.
Are these medicines helpful — do they work?
Medicines can't cure Alzheimer's disease, but they can slow it down for a while and make it easier to live with. Cholinesterase inhibitors and memantine may improve symptoms related to cognition (understanding) and behaviour — they may relieve symptoms such as having trouble thinking and remembering things. However, there is no evidence to show that they slow the underlying progression of the disease. For some people with Alzheimer’s disease, this may mean that they have improved memory and ability to perform daily tasks, improved quality of life and reduced need for care.¹
Dementia often causes a number of behavioural and psychological symptoms which can be very distressing such as depression, anxiety, sleeplessness, hallucinations, ideas of persecution, misidentification of relatives or places, agitation and aggressive behaviour. These symptoms may respond to reassurance, a change in the environment or removal of the source of any distress such as pain. However, sometimes medication may be required for relief. Examples of medicines that may be used include:
Anxiety states including restlessness and panic attacks can be very distressing for a person with dementia and their carers. These bouts of anxiety may be helped by a group of drugs known as benzodiazepines such as
Medicines are sometimes used to treat disruptive behaviour such hallucinations, delusions, aggression, agitation and psychosis, when other measures have not been helpful. These medicines are known as anti-psychotics. Note, anti-psychotics are not effective for wandering, social withdrawal, shouting, pacing or touching. Examples of anti-psychotics include
Risperidone is the only medicine that is officially approved for this use in New Zealand. Antipsychotics have been associated with an increased risk of stroke in people with dementia, so they are used as a “last resort” if there is immediate risk of harm to the patient or others. They should not be used long-term for dementia. Common adverse effects include drowsiness, dizziness and confusion which may increase the risk of falls. The response to treatment and adverse effects need to be closely monitored.
Dementia course National collaboration between primary, secondary and tertiary care providers, Goodfellow Unit (more detailed information below)
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 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.
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 all clinical staff in assessing the driving safety of a person who wish to continue driving in the context of having cognitive impairment.
The latest edition of Alzheimers News, a quarterly newsletter from Alzheimers New Zealand. This issue looks back at Alzheimers New Zealand's activities for World Alzheimers Month and features stories and information from a national and regional perspective about dementia.