Dementia / Mate Wareware: Most people with dementia live in the community and are undiagnosed

Karen Holland, Manager Community Outcomes at The Selwyn Foundation discussed dementia at our recent Annual General Meeting.

What is dementia /mate wareware?

Dementia is an overarching term describing a group of symptoms that affect how well our brains work. To date there are 400 types of dementia known, a lot of research continues worldwide.  The most common type of dementia is Alzheimers Disease, it currently accounts for 2/3 of the diagnosed dementia cases worldwide.

Dementia symptoms depend on the part of the brain affected. The most common symptoms include changes in memory, thinking, emotions, personality, and behaviour.

Most cases of dementia are diagnosed after age 65yrs (correctly titled Late Onset Dementia) but dementia is NOT a normal condition of ageing. Young Onset Dementia (YOD) are adults diagnosed under 65yrs. Children can have dementia but that is rare.

Typical progression of dementia /mate wareware

Initially people with dementia remain involved in their everyday activities such as: employment, sports & hobbies, usual contact with friends and family/whānau, social networks & community groups, etc.

Increasing they have difficulty with everyday tasks (e.g. decisions re paying bills, remembering to eat), and it progressively interferes with their everyday life (e.g. personal hygiene, dressing appropriately for the weather, etc).

These factors cause their confidence to drop, correspondingly they reduce their social contacts. Friends are unsure what is happening, they feel confused by the behaviour changes, they may feel insulted by comments and/or feel unappreciated and may increasingly distance themselves.

The person with dementia commonly feels ‘they are failing at everything’, the onset of depression is common.

Typically, as Dementia progresses the person loses insight of what they are saying and doing, their comments may become more abrupt, or their communication may progressively shut down. Commonly they may put their own and others safety at risk, their awake sleep patterns can change, such as getting up in the night-time, turning on lights and music, they try to cook and may walk away leaving a fire risk, etc.

Each above stage places more pressure on the key family/whānau carer whose life progressively becomes smaller, because increasingly it is unsafe to leave the person with dementia alone.

How many people in New Zealand have dementia /mate wareware?

Most people are undiagnosed, most live in the community.

The Dementia Economic Impact Report (by University of Auckland, 2020) estimated that in 2020 dementia was costing New Zealand $2.5billion for the 70,000 NZr’s with dementia, they noted only 20,000 of those were in 24/7 Care Homes. Their projections are:

• By 2030 there will be 100,000 NZr’s with dementia and based on 2020 costs that will cost NZ $3.5billion.
• By 2050 there will be 170,000 NZr’s with dementia and based on 2020 costs that will cost NZ $5.9billion.

The reason for the steeply increasing numbers of dementia is because the large baby boomer generation (born 1946-1964) are swelling the population of older NZR’s. In NZ, as in other OECD countries, older people are defined as those 65+years.

What memory loss requires discussion with your GP?

What is normal old-age forgetfulness?	Memory loss to discuss with your GP
Forgetting where you left your credit card.	Forgetting what a credit card is used for.
Repeating a story to a friend or spouse.	Repeating a story over and over in the same day to the same person.
Forgetting what you ate for breakfast.	Forgetting what you ate for breakfast 15 minutes ago.
Using calendars and lists to remind yourself.	Not understanding what calendars and lists are used for.
Sometimes forgetting where you parked the car at the shops.	Forgetting that you drove to the shops or that you have a car.
Being disorientated for a moment upon waking in a motel room.	Getting lost in your own home where you have lived for several years.
Worrying that you have memory problems.	Becoming unaware and uncaring that you have memory loss.

What to do if you suspect someone in your circle may have more than normal old-age forgetfulness?

Be aware the person may not be receptive to discussion about this, or they may not recognise the degree of memory loss they are showing.

Gather information from reliable sources, see the websites listed at the foot of this article: Dementia New Zealand; Alzheimers New Zealand; and Dementia Australia.

Armed with the above information talk with the person’s key family/whānau contact, if you are that person talk to the person’s GP or Nurse Practitioner at the General Practice.

Early diagnosis enables starting medication and referral to Cognitive Stimulation Therapy (CST, a talking therapy), both are proven to slow down progression of dementia for many people.

Early diagnosis enables assigning a community based ‘Qualified Case Worker’ to provide information, support and solutions ‘to live well at home with dementia’.

Can you reduce your risk for dementia / mate wareware? YES

The 14 Modifiable Risks for Dementia – “it is never too late to start”: published by The Lancet Commission on 31 July 2024.
What is good for your heart is good for your brain – for more information Improve your wellbeing for future heart health - Heart Foundation NZ	Keep your brain functions stimulated throughout your life – for more information Risk factors and risk reduction | Alzheimer's Disease International (ADI) (alzint.org)
High blood pressure	Hearing Impairment – for more information About Hearing Loss » New Zealand Audiological Society (audiology.org.nz)
Midlife high LDL cholesterol	Vision loss – for more information Blind Low Vision NZ - Resources
Diabetes	Infrequent social contact - for more information Social isolation | Healthify
Physical inactivity	Depression – for more information Home | Depression and Anxiety | Depression and Anxiety | Welcome to a Brand New Day
Obesity	Head injury – for more information Head injuries and concussion (info.health.nz)
Smoking – for more information Stop smoking services | Smokefree	Less education – for more information Why more education lowers dementia risk | University of Cambridge
Excessive alcohol consumption - for more information Alcohol – general information | Healthify	Air pollution – for more information Air pollution and the risk of dementia | Alzheimer's Society (alzheimers.org.uk)

For more information:

Dementia New Zealand Dementia New Zealand | Dementia NZ Services And Support

Alzheimers New Zealand Alzheimers New Zealand

Dementia Australia  Home | Dementia Australia.

 

 

Photo by Richard Sagredo on Unsplash