Get Information

Who gets dementia?

Dementia affects people of all cultures, intellectual abilities and lifestyles. It is not a normal part of ageing, although the likelihood of getting dementia increases as a person ages. This doesn’t however, mean that younger people – people aged less than 65 – don’t also get dementia. Some people may be predisposed to dementia by pre-existing intellectual disability, head injury or family history. Dementia is very common and as our population ages it is likely that everyone will have contact with someone with dementia. So the answer to “who gets dementia?” is really, “Anyone, though it is much more likely in older people”.

Signs and Symptoms of dementia

As people age there are the expected changes in strength, stamina, endurance and physical robustness. We can also expect to see some subtle changes in cognition. So when does the normal decline in cognition with age become a concern that there is more going on?

Repeating yourself occasionally, losing the odd word and taking time to do tasks in unfamiliar environments are within the realm of normal ageing – often called “a senior moment”. Many people in their 80s and 90s will have mild changes in cognition, but they continue to function well in their day to day tasks. When changes in cognition lead to people struggling to function in the same way they have always done then we need to become concerned and take action.

For a smaller group of people cognitive changes can start in their 40s, 50s and 60s – this is often over looked as no one is expecting cognitive changes in people so young.

10 signs of Early Dementia to be aware of

1. Subtle short-term memory changes

   Trouble with short term memory can be an early symptom of many types of dementia – especially Alzheimer’s Dementia. The changes are often subtle. An older person may be able to remember events that took place years ago but not what happened recently. People may forget where they left an item, forget what they were supposed to be doing and repeat themselves a lot – repeatedly asking the same question, repeatedly telling the same story to the same person.

2. Difficulty with language or communication

   For some people the first sign of dementia may be struggling to communicate thoughts or finding the right word. They may have difficultly explaining something or finding the right words to express themselves. Having a conversation with a person who has language or communication changes can be difficult. Often people with language or communication issues will withdraw and avoid social situations to protect themselves from making mistakes in front of others.

3. Changes in personality

   For some people you might also see a shift in personality. Changes could include a change from being polite and gentle to being outspoken and rude, becoming defensive or easily tipping into anger, becoming clingy/needy.

4. Changes in mood

   A change in mood is also common with dementia. For some people they are aware that things are changing but they cannot put their finer on what it is exactly. Depression and or anxiety are common in early dementia.

5. Changes in behavior

   This may be the most difficult aspect of dementia to understand, both for the person with the condition and those around them. The person is not deliberately trying to be ‘difficult’. As the brain changes, people often seek ways to reassure themselves or hold on to the control in some way. This will often appear illogical to others around them. Some people become suspicious, defensive, blaming others. Some people find it difficult to let go or stop doing things and appear quite stuck or obsessive about things that do not really matter that much to others.

6. Apathy

   Or lack of drive or initiative is common – especially in Vascular Dementia. A person with these symptoms could lose interest in hobbies or activities. They may lose interest in going out or spending time with other people, and they may seem emotionally detached.

7. Difficulty with executive functioning

   Changes in front of the brain may result in difficulties with decision making, problem solving, judgement, sequencing of tasks. This often presents as slowness to think or a confusion. The person does not think well under pressure. For some people this also means a lack of insight into what is happening to them.

8. Difficultly completing normal task

   A subtle shift in the person’s ability to complete normal day to day tasks may indicate that someone has early dementia. This usually starts with difficulty doing more complex tasks or multi-tasking. Along with the struggle to complete familiar tasks, they may struggle to learn how to do new things or follow new routines.

9. Changes in co-ordination and spatial awareness

   For some people the changes are quite physical in nature. They may have trouble understanding visual images and spatial relationships, develop balance and coordination issues, trouble judging distance and speed or seeing contrasts. This has major repercussions for safety to continue driving.

10. Struggling to adapt to change

    For someone in the early stages of dementia, the experience can be very frightening. Gradually all the things they have been able to rely on all their lives are changing, they can’t remember people’s names or faces or remember previous conversations. They can’t remember what they went to the shop for, and they may get lost on the way home. Because of this, people with early dementia might stick to a strict routine and be afraid to try new experiences. Difficulty adapting to change is a typical symptom of early dementia.

Getting diagnosed

What should I do if am concerned about myself or someone I know?

Confusion or forgetfulness may not mean you, a family member or someone you know has dementia. Some treatable conditions can cause symptoms similar to dementia, for example, infections, medication side effects or depression and anxiety.

1. Book an appointment with your GP:
   • Ask for a thorough physical, neurological and social evaluation
   • Write down a list of concerns prior to your appointment and we recommend taking someone with you
   • Your GP may ask a specialist to help in establishing a diagnosis
   • There is no one test to show whether someone has dementia
   • Dementia can only be diagnosed by excluding other possible causes of the symptoms. This is why a full medical assessment is important.
2. Getting a timely diagnosis will:
   • Allow you to access support, treatment and advice to help you navigate your dementia journey more easily.
   • Enable you to benefit from medication that may support symptoms.
   • Set up a strong network of support through your referral to Dementia Auckland so we can provide information, education, resources and support to you and those around you.
   • All you to organise, plan and live your life in full.

Although there is no cure for dementia, there is a lot of support available that recognises the importance of an individual’s needs, promotes wellbeing and increases independence.

Types of dementia

Dementia occurs as the result of physical changes in the structure of the brain. We do not yet know what causes some types of dementia and with conditions such as Alzheimer’s or Vascular Dementia it may be a combination of factors.

• Alzheimer’s Disease:

  The most common form of dementia, accounting for somewhere between 50-75% of all dementias. Caused by plaques and tangles in the brain.

  The onset of Alzheimers disease is often hard to pinpoint as it begins so subtly. Usually memory and learning problems occur early on, though people behave normally in social situations even late in the condition. The progression is gradual and smooth without plateaus. About 80% of people with Alzheimers Disease develop psychological and / or behavioural problems such as depression or apathy early on and psychosis, irritability, agitation or wandering in the mid-late stages. With severe Alzheimers Disease incontinence, gait disturbance, difficulty swallowing, and seizures occur.

• Vascular Dementia:

  Caused by damage to the blood vessels supplying the brain, this may be due to smoking, high blood pressure, diabetes or high levels of fats in the blood. This is a type of dementia (also known as Neurocognitive Disorder). Dementia causes gradual deterioration in attention, decision-making, memory and learning, language, perception and /or social behaviour. In particular, compared with other forms of dementia, there are more marked problems with attention and/or frontal-executive function (judgement, planning and decision-making).

  A person’s abilities may fluctuate more with vascular dementia than Alzheimers disease. The course of the condition is very variable and may depend on what can be done to improve blood supply.

• Lewy Body Dementia:

  Lewy body disease (LBD) is a type of dementia, in which Lewy Bodies form on the cortex of the brain causing degeneration and death of nerve cells.

  Some specific features that occur regularly in LBD and not in other types of dementia are: Parkinson’s disease-like symptoms (tremor, shuffling, stiffness, slow walking, quiet speech and loss of facial expression) visual hallucinations (seeing things that aren’t there) and fluctuations in levels of awareness and alertness.

• Fronto-temporaral Dementia:

  Frontotemporal dementia (FTD) is an umbrella term for a group of disorders affecting the frontal and temporal lobes of the brain and is the cause of at least 5% of all dementia cases, possibly more since it is difficult to diagnose. The frontal and temporal regions of the brain can be affected by other forms of dementia. For example, Alzheimers disease can start in the frontal region and poor blood supply to these lobes can occur in vascular dementia. However, generally there are three recognised forms of frontotemporal dementia.

• Behavioural-variant frontotemporal dementia

  In this condition there are early changes in behaviour, personality and executive function, that is, poor reasoning, judgement and decision-making. The behaviour and personality changes may include apathy, disinhibition (e.g. tactless, socially-inappropriate behaviour), loss of empathy and social interest. The person may develop repeated, pointless movements or sayings. Eating patterns change and the person shows a tendency to always put something in their mouth (hyperorality). The person is not usually aware of problems and may make disastrous personal or financial decisions due to poor judgement and loss of inhibitions

• Language variants of FTD

  There are two sorts of FTD that initially affect language, called Primary Progressive Aphasia (PPA):

  • In the semantic variantThe first symptoms are a decline in language skills so that the person has trouble producing words, naming things and structuring sentences. People may struggle to find and understand and pronounce words, especially the ones they do not use very often. The meaning of words can be lost, but grammar remains intact.
  • Non-fluent variation of primary progressive aphasiaIn this condition, speech is slow, laboured and halting and words may be left out and grammar misused. People might have trouble understanding complex sentences. People can retain their writing skills for a long time, but spelling and reading can be impaired.

• Younger onset Dementia

  Dementia is often thought of as an older person’s disease. However, about 5% of people who get dementia are under the age of 65; these people are referred to as having “younger onset”, or sometimes, “early-onset”, dementia.

  Because of the relative rarity, dementia symptoms in younger people are often missed or put down to something else (e.g. work stress, burnout or depression).

  Furthermore the proportion of people with the frontotemporal type of dementia is much greater than in older people with dementia. This is readily mistaken for psychiatric illness, another reason for the diagnosis to be delayed.

  Dementia of any type can begin at a younger age. However, frontotemporal dementia is a common cause of younger-onset dementia.

  Some people have a family history of young onset dementia; rare familial forms of Alzheimers or frontotemporal dementia can afflict people in their 40s or 50s. Huntington’s chorea, a genetic condition, often leads to young onset dementia. People with a history of head injury or Down syndrome are more prone to younger onset dementia. However, people with none of these risk factors can still, inexplicably, develop dementia before the age of 65.

• Alcohol Induced Dementia:

  Caused by excessive alcohol use over a long period of time. Men aged between 45 and 65 tend to be the ones who develop this type of dementia, although it can affect women and people in younger or older age groups. While younger people tend to consume more alcohol, older people in New Zealand are drinking more than previously as the baby-boomer cohort comes through.

  Alcohol-related brain disorders (ARBD) are different in that they are potentially reversible if the person stops drinking. The deterioration stops and some (though usually not all) cognitive function can be regained with abstinence.

  There are two factors that cause brain damage if someone abuses alcohol. The first is the direct toxic effect of alcohol on cells. This causes nerve cell death with brain shrinkage and can affect other organs such as the heart, hence reducing blood supply to the brain.

  The second factor is a deficiency of vitamin B1 (thiamine) which is important for brain function. Many people who drink heavily neglect their diet and thus become B1 deficient. As well, alcohol irritates the stomach lining making it harder to absorb vitamins. However, with replacement of thiamine, brain function may be preserved.

The dementia journey

Subjective Memory Loss is experienced by most people as they age. In other words, normal age related memory loss

Mild Cognitive Impairment (MCI)

The person with Mild Cognitive Impairment is usually aware that they are getting forgetful. The people who are close to them may notice these changes as well. There is however no noticeable change in functioning on a day to day basis. People with MCI are more likely to develop dementia than people without MCI. Not all people with MCI will go onto develop dementia.

Mild dementia

The person with Mild Dementia may still be able to function independently despite their memory problems. However, their memory lapses have begun to affect them on a day to day basis – poor short term memory, losing things or getting lost, changes in personality, struggling with problem-solving, decision making and complex tasks, difficulty managing bills and money, difficulty organising or expressing thoughts. For some people there is also difficulty with language, finding words and answering questions when under pressure.

Moderate dementia

As the dementia progresses the person with a moderate dementia is likely to require more assistance and guidance in their daily lives. They struggle to perform daily activities and self-cares – with increasing confusion or poor judgment, greater memory loss, needing assistance with tasks, such as getting dressed, bathing, and grooming and marked changes in personality and behaviour.

Severe dementia

As the dementia declines further they will require more hands on assistance, supervision and care. The dementia begins to affect the person’s physical capabilities – a loss of the ability to communicate, a need for full-time daily assistance with tasks such as eating and dressing, difficulty walking, sitting, and holding one’s head up and, eventually, the ability to swallow, to control the bladder, and bowel function. At this point the person will require fulltime input from family or placement into care.

Living with dementia

Nutrition and dementia

What you eat (especially a Mediterranean diet) can reduce the risk of cognitive decline and keep you physically healthy even if you have dementia. Over time, people with dementia lose the skills necessary for food preparation and forget to eat and drink enough. Using the stove may become dangerous, shopping difficult and food storage risky. For a person living on his/ her own, pre-prepared meals (produced by family or friends or commercially, or Meals on Wheels) may help them manage longer at home.

Personal care

Personal care, including washing, bathing and dressing, is a common source of anxiety for people with dementia and their carers. It is quite common for people with dementia to lose interest in, or forget about, personal hygiene. Although this can be upsetting for carers and families, it is important to try and determine the possible causes and work out ways of coping without argument or confrontation.

Dental health

Poor dental health can cause pain, infection and malnutrition – with subsequent negative effects on cognition and behaviour. As more and more people preserve their own teeth until later ages, ensuring they are kept in good condition can be a challenge. Try to reduce the amount of sugar in the diet, eat an apple after the meal and encourage them to drink plenty of water. If you need to help someone to clean their teeth, using an electric toothbrush is more efficient. It is important to explain exactly what you are going to do if they are anxious about the procedure. Let the dentist know when a person develops dementia, but try to keep up regular appointments.

Falls

People with cognitive impairment fall more often than others. Sometimes, this is due to poor judgement (e.g. walking too fast for a particular situation). They may have perceptual problems, meaning they can’t tell where the seat is behind them, or mistake a change in floor covering for a change in level. Pay attention to various environmental hazards such as loose mats to trip over or water to slip in. Painful feet and unsuitable footwear (favourite old slippers) can contribute to falls.

Sleep

Sleep is commonly disturbed in dementia. Some of this is the result of the condition itself, but it is worth investigating whether there might be another cause. Pain is worse at night and may be a reason for someone being awake.

If there are no obvious physical problems, remember the following:

• Older people tend to have more fragmented sleep and less of it.
• Try to limit daytime napping, get up at the same time in the morning, get outside and get some exercise.
• Avoid caffeine-containing products after lunch and nicotine and alcohol in the evenings.
• Make sure the bedroom is dark and comfortable and use it only for sleeping (or sex).
• Various alarm systems work to let the carer know if the person with dementia is up and about.

It is very, very difficult and exhausting for carers if their sleep is frequently interrupted. Have someone trusted stay with the person with dementia and go elsewhere for a good night’s rest. Respite care (in a rest home or hospital) will allow the carer to catch up if sleep-deprived.

Driving

Driving can seem like an automatic activity. However it is a complicated task that requires complex thought processes, manual skills and fast reaction times. Dementia can cause loss of memory, limited concentration, and vision and insight problems. This affects a person’s judgement and ability to drive safely.

 A person diagnosed with dementia may not need to stop driving straight away. However dementia causes a progressive and irreversible decline in functioning, and the person will need to stop driving at some point.

What if someone close to me may have dementia?

If the person continues to drive, discuss your concerns about their driving with them.

Planning for your future:

Dementia is an incurable, progressive condition. Unfortunately, there is a deterioration in memory, judgement, communication and reasoning abilities over time. This means that at some point you might not be able to make decisions or express your wishes. However, this does not mean that you have no say in your own future. Making plans early on means that you can get your affairs organised in advance. You can also direct the sort of care you would like to receive in the future, when you are less able to choose for yourself.

Medical Assessment for capacity

As you have a diagnosis of dementia, before you do any of the following, you may be asked to see a doctor, who will check your thinking and reasoning. This is to make sure that you are still able to make decisions in these areas.

Will

Now is the time to check that your Will is up-todate, and you have made it clear who should inherit your money, property and other things. Get good legal advice ensure it is fair and reasonable. If your thinking deteriorates, at some point you will lose the capacity to change your Will. Hence the need to update it now! Make sure that the people around you know where your Will is kept and which lawyer was involved in putting it together. It may be helpful to have a book in your house with all this written down. Your solicitor, Public Trust, Citizens’ Advice Bureau, Community Law Centre or Dementia NZ Branch can help.

Financial Matters

It is helpful to have your financial affairs are sorted out. Often this means simplifying your affairs, if you have a number of different accounts or lots of investments. It may be easier to bring everything into just one or two accounts. If possible, make sure that bank accounts are in joint names (if you’re part of a couple), so that if you can no longer operate the bank account, then your partner can. Discuss this with your bank manager, who can help you make the necessary arrangements (including organising your bank cards and Internet Banking). Early in dementia you will not necessarily want to give up all control over your financial affairs, and it might be just a matter of having a warning system in place if you or anyone attempts to make an unusual transaction. Some bank staff are now trained to be “dementia friendly”. Your bank manager or other financial advisor may be able to assist.

Enduring Powers of Attorney (EPOA)

After you receive a diagnosis of dementia, it is useful to nominate people who will take responsibility for decisions in the future, when you are no longer able to make those decisions. You will need to see a lawyer, who will draw up the Enduring Powers of Attorney documents. He or she will ask who you trust to take over making decisions for you, and check that you are thinking clearly about this. You can appoint someone in your family or a friend, and you can also nominate someone as back-up for that person, if they can no longer act for you. The Enduring Powers of Attorney are mostly not active, until a clinician has assessed you as no longer being able to make decisions yourself. It is only at that point that the person you have nominated will take over decision-making. Even then, they will need to make sure that they are making decisions in your best interest. They will also continue to consult you about things, as far as you are able. You need to keep your Enduring Powers of Attorney in a safe place, and you should give copies to those that you have nominated. Write it down in a book.

Under the law (The Protection of Personal and Property Rights Act), there are two types of Enduring Power of Attorney:

1. Enduring Power of Attorney for Property

   This person (or persons, as it can be shared), nominated by you, will take care of all your financial and property affairs, including businesses, and will make sure that everything is under control and being looked after. They will pay any bills for you and manage your income for you. They will need to consider your wishes and your best interests when doing so.

   Enduring Power of Attorney for Personal Care and Welfare

   This person (and it can only be one person), nominated by you, will take care of all decisions about your welfare, but only from that time that you cannot do this for yourself. That time depends on how your dementia progresses, but a clinician will need to have done an assessment showing that you cannot make the decisions any longer. This protects you from someone interfering before you need it.

   For Enduring Powers of Attorney, talk to your lawyer, Public Trust, Community Law Centre or Dementia NZ worker.

2. Advance Care Directive

   This is about making a plan for yourself to be used near life’s end. This information needs to be shared with your family or friends and your doctor or health care team. An advance care directive is especially important where communication may be limited in the later stages of the condition. The plan would include anything that is important to you and gives meaning to life. It is very helpful to your support people to have on paper what you might like done and relieves them of the burden of having to make such decisions. If you have an EPOA for Welfare they will be the person who helps ensure your wishes are carried out. The plan can be written and kept in a safe, known place. Put it in your book! It does not have to have any particular form, but it might be easier to download it from www.advancecareplanning.org.nz so you have an idea of what you might like to cover.