Dementia

At a glance

Seoul National University Bundang Hospital describes dementia as
"a state in which cognitive function has declined from an acquired cause, so that a person can no longer live independently in daily life".

It is not the name of one disease. It is a condition (a syndrome) that can come from many different causes.
So finding out "why it happened" matters.

There is more than one cause

• Alzheimer's disease — makes up about 70% of dementia in people aged 65 and over
• Vascular dementia — caused by disease of the blood vessels in the brain
• Dementia with Lewy bodies
• Frontotemporal dementia

Please know this — some dementia can be treated

Seoul National University Bundang Hospital explains that reversible dementia (pseudodementia)
makes up 5~10% of all cases, and that it can improve if the underlying illness is treated.

These are some of the causes.

• Hypothyroidism (an underactive thyroid)
• Normal pressure hydrocephalus
• Subdural hemorrhage (bleeding around the brain)
• Depression

That means 5~10 people out of 100 can get better if the cause is found and treated.
If you think "it is just old age" and skip testing, you miss these cases.

Where to start

The nearest Dementia Relief Center (치매안심센터). Not a hospital.

Every city, county and district public health center (보건소) in Korea has a Dementia Relief Center.
The first step is a free screening test (CIST) there.
Book an appointment and go. It does not take long.

If the test suggests a decline in cognitive function, you are guided on to hospital testing.
That process is set out below in 'Where to get tested'.

This page is reference information summarising official sources.
Always talk to a medical professional about diagnosis and treatment.

This is the worry we hear most often.
Here are the points that tell them apart, as set out by Seoul Seobuk Hospital.

The same everyday moment, but different

Putting things in the wrong place

• Ordinary forgetfulness — you leave your keys or wallet somewhere odd
• Dementia — you put an iron in the refrigerator, somewhere it could never belong

When words do not come out

• Ordinary forgetfulness — a word you use every day will not come to mind
• Dementia — you use the wrong word, so nobody can follow what you mean

Places and time

• Ordinary forgetfulness — you forget the day of the week or where you were going
• Dementia — you lose the way home and wander

Forgetting an appointment

• Ordinary forgetfulness — you go without the things you meant to bring
• Dementia — you forget that there was an appointment at all

Cooking

• Ordinary forgetfulness — you forget one ingredient
• Dementia — you cannot remember the order of the steps, and you forget that you started cooking

Judgement

• Ordinary forgetfulness — you are absorbed in one thing and forget another
• Dementia — you do something unsafe, such as putting on layers of clothes while carrying a child on your back

Mood and personality

• Ordinary forgetfulness — feelings change with the situation
• Dementia — feelings change suddenly, with sudden weeping or anger
• Dementia — the person suddenly avoids people or becomes suspicious

Numbers and procedures

• Ordinary forgetfulness — sorting out paperwork becomes hard
• Dementia — the person cannot understand passwords or how to do banking

Motivation

• Ordinary forgetfulness — it gets better with time
• Dementia — the person becomes listless and only moves when encouraged

The key difference

Ordinary forgetfulness is temporary and gets better, and daily life goes on as before.
Dementia gets worse over time, and the person loses the ability to manage life and to judge.

Early signs

These are the early symptoms of dementia listed by Seoul National University Bundang Hospital.

• Not being sure whether the medicine was taken, and repeating the same question
• Losing track of what the date is
• Beginning to get lost on familiar routes
• Struggling to find words, so sentences get shorter
• Mistakes with banking
• Finding it harder to control feelings, and a change in personality

Having a few of these does not mean it is dementia.
But if the family feels the person is not the same as before, get a screening test at a Dementia Relief Center.
It is free, and even being told it is not dementia brings peace of mind.

The early dementia screening program (치매조기검진사업) of the Ministry of Health and Welfare has three steps.
You simply follow them in order.

Step 1 — Screening test (Dementia Relief Center)

• Where — your nearest Dementia Relief Center (a city, county or district public health center)
• What — a test (CIST) that checks whether cognitive function has declined
• Who — residents who have not been diagnosed with dementia or mild cognitive impairment

If nothing unusual shows up here, you can rest easy.
If a decline is suspected, you are guided to the next step.

Step 2 — Diagnostic testing (designated partner hospital)

• Where — a designated partner hospital (거점병원) linked to the Dementia Relief Center
• What — neurocognitive testing and a consultation with a specialist
• Help with the cost — up to 150,000 won if you meet the conditions

Step 3 — Differential testing (designated partner hospital)

• Where — a designated partner hospital
• What — blood tests and brain imaging
• Help with the cost — up to 80,000 won at a hospital or clinic, up to 110,000 won at a tertiary hospital

Why is step 3 needed?
It is not only to see whether this is dementia, but to find what is causing it.
Causes such as hypothyroidism or normal pressure hydrocephalus —
causes that get better with treatment — are picked up here.

Who gets help with the cost

The Ministry of Health and Welfare says testing costs are supported for people aged 60 or over
whose income is 120% or less of the standard median income (기준 중위소득).
(People with early-onset dementia may also be included.)

The support covers the out-of-pocket cost of covered items, at actual cost,
and the eligibility rules can differ depending on the local government's budget.

Check the rules for your own area with your nearest Dementia Relief Center or public health center.
One phone call is enough.

The order matters

You do not need to start by booking a big hospital.

1. Dementia Relief Center — free screening test. This is the starting point.
2. Designated partner hospital — the center refers you. You get the diagnostic and differential tests.
3. Local clinic — after diagnosis, prescriptions and follow-up carry on somewhere easy to reach.

Which department at the hospital

• Neurology — the main department for diagnosing dementia and prescribing medicine
• Psychiatry — sees the person as well when behavior changes stand out (suspicion, anger, wandering, sleep problems)
• Neurosurgery — when a cause that surgery can improve, such as normal pressure hydrocephalus or subdural hemorrhage, has been found
• Rehabilitation medicine — when cognitive rehabilitation is needed

Should I go to neurology or to psychiatry?
Both look after dementia.
If memory loss is the main problem, neurology is the fit.
If anger, suspicion or not sleeping at night is the bigger problem, psychiatry is easier.
You can go to either one first, and they will refer to each other if needed.

Do we need a big hospital

For the hospital you will keep visiting, close to home is better.

Dementia is an illness you live with for years, sometimes more than ten years.
Taking an older parent to a far-away hospital every month is a heavy load for a family.

Once the diagnosis is done, a neurology or psychiatry clinic near home
is the better place to carry on with prescriptions and check-ups.

If you go to the outpatient department of a tertiary hospital, you need a referral letter (진료의뢰서) for national health insurance (건강보험) to apply.

You can search for local clinics and large hospitals together on the map.

First, honestly

Most kinds of dementia, including Alzheimer's disease, cannot be cured at present.
The goal of treatment is to slow the decline as much as possible and to keep the remaining abilities for as long as possible.

That said, the reversible dementia (5~10% of all cases) mentioned above
can improve when the cause is treated. That is why testing matters.

Medicine

Cognitive enhancers are used.
They act on the brain's chemical messengers and help keep cognitive function going.

Seoul National University Bundang Hospital says that
"in the early stage they can slow the decline by about 6 months to over 2 years, and they still help in late-stage dementia".

Please do not think, "why take medicine when it will not cure anything anyway".
Six months to two years is a very large amount of time for the person and the family.
The time they can still go to the toilet on their own, and still recognize their family, gets that much longer.

Things other than medicine

Seoul National University Bundang Hospital also describes non-drug treatment.

• Cognitive intervention therapy — a treatment registered as a new medical technology in 2017. Dementia Relief Centers also run cognitive programs.
• Physical activity — regular exercise such as walking
• Learning activity — things like reading, writing and arithmetic
• Social activity — meeting people and talking with them
• Managing other illnesses and keeping nutrition up — controlling high blood pressure and diabetes, and helping the person eat well

Social activity matters most of all.
Staying at home after a dementia diagnosis makes things get worse faster.
Do use the Dementia Relief Center's programs (day centers, cognitive classes). They are free.

About changes in behavior

Suspicion, anger, wandering and not sleeping at night
are symptoms of dementia, not the person's character turning bad.

Do not carry it alone. Tell the medical team in charge.
Adjusting the medicine, or learning ways to respond, often makes it better.

Every city, county and district public health center in Korea has a Dementia Relief Center.
Very often families cannot use it simply because they do not know it exists.

What you can get here

• Free screening test (CIST) — the starting point for dementia testing
• Referral for diagnostic and differential testing, and help with the cost — they connect you to a designated partner hospital
• Dementia registration and case management — once you are registered, the other support programs follow
• Cognitive programs and day centers — activities the person joins during the day
• Family classes and family counselling — a place to learn how to respond
• Care supplies — nappies, anti-slip items and so on (this differs by local government)
• Preventing people going missing — GPS wandering trackers and ID tags

24-hour telephone counselling

Dementia Helpline (치매상담콜센터) ☎ 1899-9988

When the person will not sleep at night, or suddenly becomes angry,
and you do not know what to do, you can call.

The Health and Welfare Call Center (보건복지상담센터) is ☎ 129.

The very first thing to do

Call your nearest Dementia Relief Center and ask this.

"My mother (father) has been a bit different lately. How do I get a screening test?"

They will then guide you through everything, from booking to what comes next.
You do not have to work out where to begin.

Each center runs a slightly different set of programs.
Call your local center to check what is available there.

A note first.
The amounts and rules below change every year and differ by local government.
Always check with the public health center for the district on your resident registration
or with the Dementia Helpline (1899-9988).

1. Help with dementia treatment costs

• Who — people registered as a dementia patient at a public health center (Dementia Relief Center)
• What you get — actual costs reimbursed, up to 30,000 won a month (360,000 won a year)
• What it covers — the out-of-pocket cost of dementia medicine + the out-of-pocket consultation fee on the day the medicine is prescribed
• How to apply — apply in person at the public health center for the district on your resident registration

The amount may look small, but this is medicine taken for years.
Registering alone does not get it for you. You have to apply.

2. A grade under long-term care insurance for older adults (노인장기요양보험)

This program uses national health insurance to pay for home visits by a care worker,
day and night care, and care facilities. It is the most important program for people with dementia.

Who can apply (Ministry of Health and Welfare)

• People aged 65 or over, or under 65 but with an age-related illness (dementia, cerebrovascular disease and so on)
• People who have found daily life on their own difficult for 6 months or more
• You can apply regardless of income level

Grades that relate to dementia

• Grade 5 — a person with dementia whose long-term care assessment score is 45 or above but under 51
• Cognitive support grade (인지지원등급) — a person with dementia whose long-term care assessment score is under 45

When the body is fine and only the memory is fading,
there is a separate cognitive support grade.
Do not give up thinking "my mother still walks around, so she will not qualify".

How to apply, step by step

1. Apply for an assessment at a National Health Insurance Service branch (국민건강보험공단, long-term care center)
2. An employee of the Service comes to assess the person at home
3. The grading committee (등급판정위원회) reviews the case
4. When you receive the long-term care certificate (장기요양인정서), you can start using services

At the home visit, describe the person as they are on their worst ordinary day.
It is common for an older person to become suddenly sharp in front of a visitor.
A family member needs to be there to explain what really happens.

3. Other things

• The special cost-sharing program for serious illness (산정특례) applies in some dementia cases. Check with the hospital or the Service.
• There are medical cost and welfare support programs based on income.
• For help with testing costs, see the section 'Where to get tested'.

Programmes and amounts change.
Before you apply, always check the latest rules with the public health center
or the National Health Insurance Service.

Prepare for going missing before it happens

An older person with dementia can go missing all of a sudden.
Get ready while they are still doing well.

• Fingerprint pre-registration (지문 사전등록) — done free at your local police station or police box
• ID tags and GPS wandering trackers — the Dementia Relief Center can help with these
• The family should know the places they often go and the neighbourhood they used to live in
• Write a contact number inside their clothes

Do not carry it alone

Dementia care lasts years, and sometimes more than ten years.
If one family member carries all of it, that person breaks first.

• Dementia Relief Center family classes — learning how to respond makes it far easier
• Family counselling — you can talk with families in the same situation
• Long-term care services — home visits by a care worker, and day and night care, give you time to breathe
• ☎ 1899-9988 — counselling is available 24 hours a day

Things that help day to day

• Even when they say something wrong, do not argue head-on. Arguing only builds anger
• Use short, simple sentences, one thing at a time
• If they suspect you moved something, they do not mean you stole it. It is a symptom of the illness
• A familiar setting and a steady daily routine help them stay settled

Things worth sorting out early

If the family sorts these out together while the person can still make decisions,
it is far less hard later.

• Assets such as bank accounts, insurance and property
• The hospitals they go to and the medicines they take
• The kind of care the person themselves wants

Dementia is the older person's illness and at the same time the family's business.
Asking for help is nothing to be ashamed of.