he early signs and symptoms of dementia can be hard to notice. Many illnesses can cause dementia-like symptoms. Some of these illnesses are treatable. That is why you should see your doctor or health care provider if you are worried.

Finding out if you have dementia means you can get help earlier. You can get support, information, medication, and time to plan.

It is important to understand what is dementia and what is not dementia. We all forget things as we get older. This does not mean we are getting dementia.

Examples of warning signs of dementia can include:

• Recent memory loss that causes problems in daily life

• Difficulty performing regular tasks such as cooking a meal or managing bills

• Problems with language

• Decreased or poor judgment

• Changes in mood and behaviour such as being more easily upset in new situations

Some forms of dementia can have family links. About a third of people with Alzheimers disease have or had a close relative (parent, brother, or sister) with dementia. The dementia is not always inherited and for many people there’s no family history.

For any concerns about a family history of dementia, talk to your doctor. Many treatable conditions can cause memory lapses, confusion, and forgetfulness.

If you are concerned that you, or someone you know, may have dementia, talk to your doctor or your healthcare provider.

If you find out you have dementia, help is available. Alzheimers NZ has many resources about dementia. These resources cover many questions that you may have.

The booklet About Dementia: A guide for people diagnosed with dementia provides information on:

• What dementia is

• The early warning signs and diagnosis

• Brain health and risk reduction

• What support is available

• Future planning

What is Alzheimer’s Disease?

• Alzheimer’s Disease is a progressive brain condition that causes the brain to shrink and the brain cells to eventually die.

• It was first noted in 1907 by German doctor, Alois Alzheimer. It is characterised by changes to brain structure called plaques and tangles, which are considered “prime suspects” in damaging and killing of brain cells.

• Plaques are Beta Amyloid proteins that build up in the spaces between the nerve cells, hindering the transmission of messages between the cells.

• Tangles are fibres of Tau, a protein that builds up inside the cells. They damage the connections between the cells and eventually causes the brain to die. This causes the brain to shrink.

• Changes to the brain may occur many years prior, but at a certain point the brain is unable to compensate for the changes making it unable to function properly, affecting their day to day living.

What you might see in Alzheimer’s Disease

• Cognitive problems including increased confusion, poor focus / concentration, problems with visual spatial relations and memory loss, especially recent memory. Questions may be repeated several times.

• Difficulties with planning or making decisions and less flexibility with changing tasks or multitasking. Tasks such as dealing with the bank may become difficult.

• Communication problems such as slower processing of conversations, difficulty understanding and responding, forgetting words, having word finding difficulties, or making errors with grammar.

• Changes in social behaviour/ personality may occur causing an outgoing person to become more subdued or withdrawn and a quiet person to display more irritated or angry behaviour. Problems such as depression and lack of lack of motivation may occur.

• Psychological issues such as delusions or hallucinations may also be present.

• Changes can appear subtle at the beginning, so initially, it may be difficult to identify problems.

• Memory problems can occur early in the process.

• Progression can be very gradual.

• Disorientation may cause a person with dementia to get lost and lose or misplace things.

• Later in the illness, issues such as incontinence, mobility problems, swallowing difficulties and seizures may occur.

What is Vascular Dementia?

• Vascular dementia occurs when there is impaired blood flow to the brain that causes damage.

• Factors that may increase the risk of vascular dementia include health issues such as heart disease, stroke, diabetes, high blood pressure, infection, high cholesterol, and smoking. It is important, therefore, to work to minimise or manage these factors as they may help to lessen the chances of developing vascular dementia.

• The thinking problems caused by vascular dementia may vary considerably, depending on the severity and location of the blood vessel damage.

• The symptoms of vascular dementia are often more obvious following a stroke or a series of mini strokes, causing a step like downward progression of symptoms following an event.

What you might see in Vascular Dementia

• Stroke like symptoms such as sudden one-sided weakness and problems with speech.

• Problems with movement and balance.

• Speech may become slow, muffled, or slurred. Word finding difficulties may also be evident.

• Emotional changes, creating difficulties in controlling emotions, especially with increased agitation and
  mood swings.

• Memory problems – especially Short-Term Memory.

• Problems with thinking including decreased ability to focus, poor judgement with more impulsivity, decreased ability in problem solving, reasoning, and planning. It also takes much longer to process things.

• Disorientation.

• Increased confusion – this may increase in the evening.

• Fatigue and loss of motivation.

What is Lewy Body Dementia?

• People with Lewy Body dementia are likely to experience symptoms similar to Parkinsons Disease such as rigid muscles, slow movement, trouble walking, and tremors.

• When the brain cells are examined under a microscope, they contain structures containing protein called Lewy Bodies. These structures affect the regions of the brain that are specifically responsible for thinking and movement.

• People who have Lewy Bodies in their brains also have plaques and tangles associated with Alzheimer’s Disease, so they also experience cognitive decline.

• Lewy Body can only be fully diagnosed at a postmortem. A diagnosis may be made based on the symptoms the person with dementia presents with.

• Dementia with Lewy Bodies and Parkinson’s Disease Dementia

• Parkinson’s Disease Dementia and Dementia with Lewey Bodies are the 2 most common dementias connected with Parkinsons Disease.

• Parkinsons Disease Dementia is a continuation of Parkinson’s Disease.

• Dementia with Lewy Bodies is caused by an increase of a protein called Alpha-synuclein protein, causing disturbance in function.

• Both cause problems with thinking, behaviour, and movement but in Dementia with Lewy Bodies the thinking and behaviour problems come first. In Parkinson’s related dementia the movement problems come first as the dementia is a continuation of the Parkinson’s disease process.

What you might see with Lewy Body Dementia

• Cognitive problems, like those with Alzheimer’s Disease including increased confusion, poor focus / concentration, problems with visual – spatial relations. Memory loss, and loss of motivation may not always occur early on.

• Symptoms may progress more rapidly than in Alzheimer’s Disease, lasting an average of seven years from diagnosis.

• Sleep issues including Rapid Eye Movement (REM) sleep disturbances that cause people to physically act out their dreams while asleep, causing them to possibly punch, kick, shout or scream in their sleep.

• Drowsiness during the day or long periods of vacant staring into space.

• Movement disorders like Parkinson’s Disease such as slower movement, rigidity of muscles, tremor and shuffling walking causing increased falls risk.

• Visual hallucinations are often one of the first symptoms noted, with people seeing shapes, animals and people that aren’t there. Other hallucinations involving sounds, smells, or touch may also be present.

• Lewy bodies can sometimes affect parts of the brain associated with vision. This leaves a person’s ability to process and respond to visual information altered. It can lead to a loss of vision, not because they have an eyesight problem – but because they have a problem with perception.

• Inability to regulate body functions can occur due to the diseases’ effect on how well the automatic nervous system is working causing blood pressure to drop when the person stands up, dizziness, increased falls, loss of bladder control, and constipation.

• People with Lewy Body dementia may be more sensitive to the drugs that are helpful in treating dementia. The anti-psychotic drugs used to treat hallucinations may cause serious side effects making treatment difficult. Also, anti Parkinson’s medications can make psychotic symptoms worse, making it hard to treat those symptoms. These issues make drug therapy a very careful “balancing act”.

What is Frontotemporal Dementia?

• Frontotemporal Dementia is caused by damage to the neurons in the frontal and temporal lobes of the brain. It is, therefore, associated with problems with movement, behaviour, personality, and language.

• Frontotemporal Dementia is a rarer form of dementia, but it is still common enough to be quite well known. It is more common for people who are younger in age than other forms of dementia. Approximately 60% of people with Frontotemporal Dementia are under the age of 65.

• It is a progressive disease with symptoms getting worse and increasing over time as other parts of the brain become affected.

The Relationship Between Brain Injury and Frontotemporal Dementia

• It is possible that people with Chronic Traumatic Encephalopathy, (CTE), can, overtime, begin to exhibit signs of dementia, including Frontotemporal Dementia as there is frequently degeneration in the frontal lobe in Chronic Traumatic Encephalopathy.

• More research needs to be carried out to understand why some people with repeated head injuries develop Chronic Traumatic Encephalopathy and others don’t. Research is currently being undertaken to ascertain whether certain genes, age, or lifestyle factors are also common influences. Nevertheless, it is important to ensure preventative measures are carried out to minimise head knocks and proper medical attention is also sought if you or someone you care about sustains a head injury.

What You Might See in Frontotemporal Dementia

• ‘Frontotemporal’ means that the neurons in the frontal and temporal lobes of the brain have been affected. These areas of the brain relate to personality, behaviour, language, and, in some instances, movement.

• Symptoms connected with personality and behaviour include:
  1. Inappropriate social behaviour e.g. inappropriate laughing or crying.
  2. Inability to empathise – due to emotional detachment.
  3. Poor Judgement.
  4. Disinhibition.
  5. Apathy and a decrease in interpersonal skills e.g. being disinterested or lacking sensitivity.
  6. Decreased interest in personal hygiene.
  7. Increasing dependence.
  8. Increase in compulsive behaviours, especially around food, e.g. preferring sweets and high carbohydrate foods, and or overeating.
  9. Increased agitation

• Symptoms associated with language include:
  1. Difficulty using and understanding both written and spoken language.
  2. Difficulty with word finding and understanding word meanings.
  3. Naming things may become more difficult causing the person to replace specific words with more general ones. E.g. calling a book ‘it’
  4. No longer knowing the meaning of more common words.
  5. Hesitant speech, using short sentences. Difficulty building sentences.
  6. Less frequent speech.

• Rare types of Frontotemporal Dementia may have symptoms similar to Parkinson’s Disease. Symptoms associated with movement include:
  1. Rigidity.
  2. Tremor.
  3. Muscle spasms.
  4. Poor Co – ordination.
  5. Swallowing difficulties.
  6. Muscle weakness.
  7. Increased falls or difficulty walking.

• Psychological symptoms are rare but can include:
  1. Hallucinations
  2. Delusions.

Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s mind. It is a broad term which describes a loss of memory, intellect, rationality, social skills and normal emotional reactions, as well as speech and behaviour change. The term ‘younger onset dementia’ is usually used to describe any form of dementia diagnosed in people under the age of 65.

Dementia in younger people is much less common than dementia occurring after the age of 65, and has been diagnosed in people in their 50’s, 40’s and even in their 30’s. For this reason, it can be difficult to diagnose, and its incidence in the community is still not clear.

A correct diagnosis is important.
Consulting a doctor to obtain a diagnosis is critical at an early stage. It may be however that diagnosis in a younger person may take some time as doctors must eliminate other possible causes of symptoms. A complete medical and psychological assessment may identify a treatable condition, or it may confirm the presence of dementia.

A diagnostic evaluation might include:

• A detailed medical history, provided if possible by the person with the symptoms and a close relative or friend. This helps to establish whether there is a slow or sudden onset and its progressions.

• A thorough physical and neurological examination, including tests of the senses and movements. This is to rule out other conditions, and to identify possible medical illnesses which may worsen the confusion associated with dementia.

• Laboratory tests including a variety of blood and urine tests (sometimes called a “dementia screen”) to test for a variety of possible illnesses which could be responsible for the symptoms. The dementia screen is available through a doctor. Other specialised tests including a chest x-ray, ECG and CT scan may be recommended.

• Mental status test to evaluate the range of intellectual functions such as memory, the ability to read, write and calculate which are often affected by dementia.

• Psychiatric assessment to identify treatable disorders such as depression, which can mimic dementia, and to manage any psychiatric symptoms such as anxiety or delusions which may occur in conjunction with dementia.

• Neuro-psychological testing to identify retained abilities and specific problems in areas such as comprehension, insight and judgement.

Are the needs of people with younger onset dementia different?
A person with younger onset dementia will need extra consideration because the dementia appears at an earlier stage of their life when they are likely to be more physically and socially active.

When diagnosed they may be:

• In full time employment Actively raising a family

• Financially responsible for the family

• Physically strong and healthy

Changed behaviours that are associated with dementia may be more difficult to accept and manage in a younger person.

For the family member who is caring for someone with younger onset dementia there are a number of issues that may arise:

Loss
The sense of loss for the person with younger onset dementia and their family can be enormous. Unplanned loss of income if the person with dementia was earning an income can be a major problem for the family. This can be made worse by the loss of self-esteem that comes if employment ceases, and the loss of a purpose in life. Future plans, perhaps for travel and retirement, or time with children or grandchildren may no longer be viable.

Changes
Carers who are partners may have double the responsibility of caring for the person with dementia as well as raising children and managing finances. Sometimes families and carers must reduce or give up work altogether to care for the person with dementia. These changes can be significant.

Attitudes
An added difficulty can be the attitude of other people. It can be difficult to accept that a younger person can have dementia, particularly when no obvious physical changes can be seen. It may appear that no-one else in the family or carer’s age group understands what is happening. Most people affected by the illness find that friendships may fade as the dementia progresses, but a younger person’s friends may break away even earlier.

Children
Children may react differently to the disease, but are likely to have strong reactions. At a time when they are trying to cope with their own growing up, they find that they also have to cope with a family member who is unwell.
They may become angry, resentful and withdrawn. Some young people may have problems talking with their parents because they don’t want to worry them or are afraid of making them sad, or of being an extra burden. They may prefer to talk to people their own age or to a counsellor.

Remember
You are not alone

Dementia New Zealand can also put family and carers in touch with other family and carers of people with younger onset dementia and provide links to support groups.

Useful websites:

Rare Dementia Support (RDS): https://www.raredementiasupport.org

Dementia UK: Younger Onset Dementia https://www.dementiauk.org/about-dementia/young-onset-dementia/

Dementia Australia: Younger Onset Dementia https://yod.dementia.org.au/about-younger-onset-dementia

What is Parkinsons’ Disease Dementia?

• Parkinson’s Disease Dementia occurs when a person who already has a diagnosis of Parkinsons experiences gradual changes in thinking and behaviour as described above as well as the problems with movement and tremor associated with Parkinson’s disease.

• Most people with Parkinsons Disease notice problems with movement between the ages of 50-85.

• The average time frame from the onset of movement problems to the development of dementia symptoms is approximately 10 years.

• Parkinson’s Disease and Dementia with Lewey Bodies

• Parkinson’s Disease Dementia and Dementia with Lewey Bodies are the 2 most common dementias connected with Parkinsons Disease.

• Parkinsons Disease Dementia is a continuation of Parkinson’s Disease.

• Dementia with Lewey Bodies is caused by an increase of a protein called Alpha-synuclein protein, causing disturbance in function.

• Both have problems with thinking, behaviour and movement but in Dementia with Lewey Bodies the thinking and behaviour problems come first and in Parkinson’s related dementia the movement problems come first as the dementia is a continuation of the Parkinson’s disease process.

What you might see in Parkinson’s Disease Dementia

• Tremors, slowed movement, and poor balance.

• Freezing when walking- usually when taking the first step.

• A less expressive face.

• Speech may become slow, muffled, or slurred. Word finding difficulties may also be evident.

• Emotional changes, creating difficulties in controlling emotions, especially with increased agitation and mood swings.

• Memory problems – especially Short-Term Memory

• Problems with thinking including decreased ability to focus, poor judgement with more impulsivity, decreased ability in problem solving, reasoning, and planning.

• Disorientation.

• Increased confusion

• Fatigue and loss of motivation.

• Sleep problems especially wanting to sleep more during the day and Rapid Eye Movement, (REM) sleep disorder.

• Hallucinations

• Delusional Thinking with an increase in paranoid ideas.

What you might see in Vascular Dementia

• Stroke like symptoms such as sudden one-sided weakness and problems with speech.

• Problems with movement and balance.

• Speech may become slow, muffled, or slurred. Word finding difficulties may also be evident.

• Emotional changes, creating difficulties in controlling emotions, especially with increased agitation and mood swings.

• Memory problems – especially Short-Term Memory

• Problems with thinking including decreased ability to focus, poor judgement with more impulsivity, decreased ability in problem solving, reasoning, and planning.

• Disorientation.

• Increased confusion

• Fatigue and loss of motivation.

• Sleep problems especially wanting to sleep more during the day and Rapid Eye Movement, (REM)sleep disorder.

• Hallucinations

• Delusional Thinking with an increase in paranoid ideas.

Alcohol-related ‘dementia’ is a type of alcohol-related brain damage (ARBD). If a person has alcohol-related ‘dementia’ they will struggle with day-to-day tasks. This is because of the damage to their brain, caused by regularly drinking too much alcohol over many years.

The symptoms of alcohol-related ‘dementia’ can change a lot from person to person. If a person with the condition has a brain scan, it will often show that some areas of the brain have shrunk much more than others. Alcohol particularly affects the frontal lobes of the brain.

Further support for people with problems with alcohol

A range of treatment options are available to help people who have problems with alcohol. Prompt treatment is important for people who develop changes in brain function.

Talk to your doctor for advice and referrals, visit www.alcoholdrughelp.org.nz or call 0800 787 797.

Support is available to help you with your personal care needs (eg, washing or dressing) or essential housework.

We will always focus on helping you to be as independent as possible, or to regain any lost independence.

Personal care support

If you receive help to have a shower, your helper should also clean the shower afterwards. Please note:

• your individual circumstances determine the frequency of this type of support

• your preferred time to have a shower may not always be suitable due to the high demand for showering assistance early in the morning or last thing in the evening.

Essential housework support

This support ensures your home environment is not hazardous to your health.  Essential housework tasks include:

• cleaning bathrooms (if not already completed as part of the personal care support)

• changing bed linen

• cleaning kitchen surfaces and floors

• vacuuming the main living areas

Housework does not ordinarily extend to dusting, cleaning windows or any maintenance of the exterior. 

Eligibility for housework services

• a current Community Services Card is required

• if you do not have a card, and housework support is your only need, you may be required to pay for this service

• if you have someone living with you that may be able to help you are not eligible for this support

The providers are Access Community Health and Nurse Maude.

Respite care is available for people who are cared for in their home by someone who lives with them.

If you are a caregiver and need a break, have to go into hospital or become unwell, we can organise respite care for the person you care for.

Find out where respite can be provided.

Day programmes connect you with your community.

You will be picked up, taken home, and you will receive a meal before going home. Day programmes are tailored to your particular circumstances and are available for people who:

• have poor mobility

• have memory loss or other cognitive changes

• would prefer to attend smaller groups held in people’s homes

• would prefer larger groups or activities hosted by their residential care provider.

Your Support Works assessor will help you to decide a suitable programme.

Carer support is another way that we can give you a rest from caring for someone.

It is different from respite, where the person you care for stays elsewhere temporarily.

Instead, someone will come to your house while you are away. They can claim reimbursement but are not considered to be a 'paid carer'.

For more details on when you can claim carer support.

For more details on any of the above services please contact Support Works.

• what really matters to them, their values, priorities and goals

• their current and possible future health

• the care and treatments they might need

• the choices they might face.

• their whānau about what matters most to them and what they would want if their health changed or they were unable to tell us themselves

• their general practice team and other health care providers about their current and future health, treatments and care options they might face and to understand the risks and benefits

• health care providers when their health changes and they need to make decisions about treatment(s).

• so everyone knows what care would support what is most important to them

• for treatments and care they would or would not want if their health changes

• the treatments they do not want if they are unable to speak for themselves.

• informing us about who should be involved in decision-making

• providing information about a person’s values, goals and preferences to inform treatment planning

• providing direction about what a person would want should they be unable to tell us themselves, including advance directives.