New Zealand

Research conducted in November 2025

New Zealand’s response to Alzheimer’s disease, locally understood through the Māori concept of “mate wareware”, is guided by the Dementia Mate Wareware Action Plan (2026-2031). The country has pioneered culturally specific diagnostic tools like the MANA toolkit, moving beyond standard Western screening to provide assessments sensitive to Māori needs. However, despite these innovations, the health system is facing what advocates describe as a “national health emergency”. Implementation of the national plan remains underfunded, creating a “postcode lottery” for post-diagnostic support where families (particularly in rural areas) struggle with long wait times for specialist memory clinics and inconsistent access to respite care.

Overall
AD Rating
Diagnostic Pathway
New Zealand utilises a standardised diagnostic pathway that incorporates culturally specific tools like the MANA toolkit, but specialist referrals face severe bottlenecks with long wait times.
Specialized Care
The state heavily subsidises standard symptomatic medications, but access to specialised diagnostic hubs and memory clinics is highly concentrated in major metropolitan areas, leaving rural populations at a significant disadvantage.
Caregiver Support
While the state offers some needs-assessed respite care, NGOs like Alzheimers NZ and Dementia NZ have formed the primary backbone of post-diagnostic support for decades, and families lack direct financial care allowances.
National Policies
New Zealand recently introduced the Dementia Mate Wareware Action Plan (2026–2031), but underfunding may stall comprehensive implementation.
Access to ATT-s
No therapies approved.
Organizations are listed for informational purposes based on publicly available sources. Inclusion does not necessarily indicate affiliation with or endorsement by Alzheimer’s Disease International (ADI).

Highlights

Health system
Universal, Mixed Funding (Mixed Provisions)
ADI member association(s)
Alzheimers New Zealand
National dementia plan
Dementia Mate Wareware Action Plan (2026-2031)
Dementia plan funding
Funded plan
Dementia prevalence rate
1,217.00
Dementia incidence rate
215
*per 100k Population
Prevalence Rate (per 100,000): 
This measures the total number of existing cases (both old and new) in a population at a specific point in time, divided by the total population and multiplied by 100,000. It tells you the overall "burden" or how widespread a condition is at that moment.
Incidence Rate (per 100,000): 
This measures the number of new cases that develop in a population over a specific period (usually one year), divided by the population at risk and multiplied by 100,000. This tells you the "speed" or risk of contracting the condition.

Population

5,264,978

Median age

37.7

Health expenditure (% of GDP)

10

Diagnosis

In New Zealand, the journey to a dementia diagnosis often begins with a visit to a GP after a person or their family/whānau notices changes in memory, behavior, or daily functioning. The GP reviews symptoms, rules out reversible causes through history, examination, and blood tests, and uses screening tools such as the Mini-ACE. Many diagnoses are made in primary care, while complex cases are referred to specialists or memory services, usually within about two months. Brain imaging like CT or MRI may support diagnosis. Culturally appropriate assessment tools, such as the MANA toolkit for Māori whānau, are also available. After diagnosis, people are connected to planning, support services, and caregiver resources. GP visits usually have a fee, but public specialist care is free for eligible residents.

Diagnosis pathway

The dementia diagnosis pathway usually begins in primary care and moves from clinical assessment to structured post-diagnostic support. The process often starts when individuals or their family/whānau spot cognitive, behavioral, or psychological changes affecting everyday life. GPs take a detailed history, often with input from the family, and assess symptom patterns. They rule out reversible causes of cognitive impairment, such as depression, medication side effects, delirium, infections, alcohol misuse, or metabolic conditions, typically supported by routine blood tests. If reversible causes are not found, GPs conduct cognitive screening using tools such as GPCOG or the Mini-ACE. Many dementia cases are diagnosed and managed within primary care, while referrals to specialists, such as geriatricians or memory services, are made for complex or uncertain presentations. After diagnosis, patients are connected to support pathways promoting early planning, advance care arrangements, and caregiver support services.

The Alzheimer’s disease diagnosis pathway in New Zealand begins in primary care and is designed to move from initial clinical assessment to a formal post-diagnostic support plan. The process starts when a person or their family/whānau reports concerns about cognitive, behavioural, or psychological symptoms that are impacting daily life. The general practitioner (GP) takes a detailed clinical history from both the patient and an informant who knows them well (e.g., a family member). This history establishes the type, duration, and pattern of symptoms (e.g., sudden or gradual). A critical step is to investigate and rule out other causes of cognitive impairment. This includes screening for depression, reviewing medications for adverse effects, and considering delirium, infections (like a UTI), or alcohol misuse. The GP also orders a standard set of blood tests to identify reversible causes, such as a full blood count, thyroid function, serum vitamin B12 and folate, and tests for renal and liver function.

If reversible causes are excluded, the GP proceeds with a formal cognitive assessment. A brief, structured cognitive test is administered, such as the GPCOG (General Practitioner assessment of Cognition), the Mini-Addenbrooke’s Cognitive Examination (Mini-ACE) or the MANA – the Māori Assessment of Neuropsychological Abilities suite of tools. Many people living with dementia can be diagnosed and managed within primary care. Referral to a secondary care specialist (like a geriatrician or memory service) is typically reserved for cases with diagnostic uncertainty or significant complexity. A follow-up consultation is required to discuss the diagnosis with the person and their family/whānau. This conversation covers the management plan and, crucially, connects them with support services.

Wait times

Long wait time (expected)

Patients experience significant healthcare delays at multiple stages, with GP appointments frequently taking two to six weeks and specialist referrals often exceeding their four-month target. However, specific populations like those with young-onset dementia see notably shorter wait times, averaging just under two months for a specialist visit.

Wait times are often substantial and occur at multiple stages. Access to a GP can take over two weeks for about one-third of patients, with many waiting three to four weeks or longer, and some reporting waits of up to six weeks in certain areas. After initial assessment, referral to specialist services (e.g. geriatricians or memory clinics) introduces the greatest delay: although the target is to be seen within four months, tens of thousands of patients are waiting longer than this for a first specialist assessment as of early 2025, with some waiting over a year. However, in specific populations such as young-onset dementia, shorter timeframes have been reported; a 2024 study found the average time from GP referral to first specialist visit was 1.9 months, with 81% of patients seen within three months.

Diagnosis cost

Partially covered

Initial GP visits in New Zealand usually require a fee, though enrolled patients receive government subsidies. Public specialist or memory service appointments and diagnostic tests are free for eligible residents.

An initial visit to a GP is not free; GPs are private businesses with different visit fees. The cost of a visit will be lower if the individual is enrolled with the practice, as the Government partially subsidises the fee for enrolled patients. If an individual is referred to a specialist or a memory service within the public health system (Te Whatu Ora), the appointments and subsequent diagnostic tests are free for eligible New Zealand residents.

Cognitive tests

Available

The recommended cognitive impairment screening tool in New Zealand is Mini-Addenbrooke’s Cognitive Examination (Mini-ACE or M-ACE); it has replaced the Montreal Cognitive Assessment (MoCA) test as New Zealand’s recommended cognitive screening test.
The diagnostic suite for mate wareware for use with Māori whānau is called the MANA – the Māori Assessment of Neuropsychological Abilities suite of tools. The MANA was developed in research led by Māori for Māori. The MANA is not simply a cognitive screening measure but rather a whole toolkit for a comprehensive assessment that is sensitive to Māori cultural needs.

Imaging tests

Commonly used

Structural imaging, specifically Computed Tomography (CT) and Magnetic Resonance Imaging (MRI), is widely available through both public (Te Whatu Ora) and private radiology services in New Zealand. While access is broad, the diagnostic imaging sector faces challenges due to a global radiologist shortage and a growing demand driven by an aging population. More advanced techniques, such as FDG-PET and molecular PET (amyloid imaging), are available but their accessibility is significantly restricted compared to structural imaging.

Genetic tests

Genetic testing for Alzheimer’s disease (e.g., APOE genotyping or rare familial mutations) is available in New Zealand but not routinely used in standard clinical diagnosis. It is typically accessed through specialist services or research settings, particularly when there is a strong family history or early-onset disease, and in cases where a person is presented with symptoms. Guidelines from LabPLUS (Auckland City Hospital) and Best Practice Advocacy Centre New Zealand (BPAC) state that because the Epsilon 4 allele is a risk factor rather than a deterministic marker, it has low predictive value and lacks clinical utility for asymptomatic or standard late-onset cases.

Predictive genetic testing (e.g., testing unaffected individuals for familial mutations) is managed through the national genetics service and requires formal genetic counselling. Health New Zealand notes that predictive genetic testing referrals should go to Genetic Health Service NZ for counselling and oversight.

Biomarker tests

Rarely used

Cerebrospinal fluid (CSF) and blood-based biomarkers are not yet part of the routine clinical diagnostic process, which remains focused on clinical evaluation and structural imaging.

Cognitive Tests

Available

The recommended cognitive impairment screening tool in New Zealand is Mini-Addenbrooke’s Cognitive Examination (Mini-ACE or M-ACE); it has replaced the Montreal Cognitive Assessment (MoCA) test as New Zealand’s recommended cognitive screening test.
The diagnostic suite for mate wareware for use with Māori whānau is called the MANA – the Māori Assessment of Neuropsychological Abilities suite of tools. The MANA was developed in research led by Māori for Māori. The MANA is not simply a cognitive screening measure but rather a whole toolkit for a comprehensive assessment that is sensitive to Māori cultural needs.

Imaging Tests

Commonly used

Structural imaging, specifically Computed Tomography (CT) and Magnetic Resonance Imaging (MRI), is widely available through both public (Te Whatu Ora) and private radiology services in New Zealand. While access is broad, the diagnostic imaging sector faces challenges due to a global radiologist shortage and a growing demand driven by an aging population. More advanced techniques, such as FDG-PET and molecular PET (amyloid imaging), are available but their accessibility is significantly restricted compared to structural imaging.

Genetic Tests

Genetic testing for Alzheimer’s disease (e.g., APOE genotyping or rare familial mutations) is available in New Zealand but not routinely used in standard clinical diagnosis. It is typically accessed through specialist services or research settings, particularly when there is a strong family history or early-onset disease, and in cases where a person is presented with symptoms. Guidelines from LabPLUS (Auckland City Hospital) and Best Practice Advocacy Centre New Zealand (BPAC) state that because the Epsilon 4 allele is a risk factor rather than a deterministic marker, it has low predictive value and lacks clinical utility for asymptomatic or standard late-onset cases.

Predictive genetic testing (e.g., testing unaffected individuals for familial mutations) is managed through the national genetics service and requires formal genetic counselling. Health New Zealand notes that predictive genetic testing referrals should go to Genetic Health Service NZ for counselling and oversight.

Biomarker Tests

Rarely used

Cerebrospinal fluid (CSF) and blood-based biomarkers are not yet part of the routine clinical diagnostic process, which remains focused on clinical evaluation and structural imaging.

Treatment & Care

People with high or very high care needs, often older adults or those living with dementia, can access state-funded residential care, assessed by Health New Zealand | Te Whatu Ora and NASC agencies, with costs adjusted based on financial means. National and community organizations, including Dementia Canterbury, Te Puna Ora o Mataatua, Aotearoa Tongan Health Workers Association, and Te Hau Ora o Ngāpuhi, provide culturally responsive support, while private options exist through Summerset retirement villages. Approved prescriptions have low or waived co-payments, and high-use patients can get a Prescription Subsidy card. Carers can access DSS-supported respite care, including day programs, short-term residential stays, or in-home respite, helping families maintain wellbeing and continuity of care.

Specialized facilities and services

Specialised diagnostic and memory clinics are largely concentrated in major cities, which often requires rural patients to travel for assessment. However, broader post-diagnostic care is widely distributed across New Zealand through regional adult day centres accessed via NASC, a nationwide network of free hospice services, and long-standing Alzheimer’s and Dementia organisations that provide essential community support.

Specialised memory clinics and diagnostic hubs are primarily concentrated in major metropolitan hubs. Research-led Dementia Prevention Research Clinics (DPRCs) operate in Auckland, Christchurch, and Dunedin, focusing on early-stage Alzheimer’s and mild cognitive impairment. Public multidisciplinary memory teams, such as those in Counties Manukau and Waikato, provide diagnostic assessments but often have limited home-visit ranges, requiring rural patients to travel or rely on GP-led pathways.

Adult day centres and community support programmes are distributed regionally through providers like Enliven Northern, which covers Auckland, Waikato, and the Coromandel, and specialised centres like Forget Me Not in Whangārei. Access to these publicly funded programmes is managed by local Needs Assessment and Service Coordination (NASC) agencies, which act as the national gateway to determine eligibility for funded days.
Specialist palliative and end-of-life care is provided nationwide by the Hospice New Zealand network, including Nurse Maude in Canterbury and Nelson Tasman Hospice, at no cost to patients. These facilities offer inpatient Specialist Palliative Care Units (SPCU) for intensive symptom management and 24-hour nursing, alongside community teams that support patients in their own homes or aged care facilities.

Alzheimers and Dementia organisations have been the primary providers of post diagnostic support in all communities across Aotearoa New Zealand for almost 40 years. They deliver a range of services to support people living with dementia and their care partners to remain active members of their families and communities for as long as possible including navigation, education, cognitive stimulation therapy, carer support, peer support, and day programmes. Links to all of these organisations are available here: https://alzheimers.org.nz/get-support/find-local-help/.

Approved medication

Generic Name Trade Name Used for
Donepezil Aricept, Aricept ODT, Adlarity, Eranz, Memac, Alzepil, Davia, Donecept, Donep, Donepex, Donesyn, Dopezil, Yasnal, Memorit, Pezale, Redumas, Zolpezil, Namzaric* Donepezil is indicated for the symptomatic treatment of mild to moderately severe Alzheimer’s dementia.
Official National Product Information
Rivastigmine Exelon, Exelon Patch, Prometax, Rivastach, Nimvastid Symptomatic treatment of mild to moderately severe Alzheimer’s dementia.
Symptomatic treatment of mild to moderately severe dementia in patients with idiopathic Parkinson’s disease.
Official National Product Information
Galantamine Razadyne, Razadyne ER, Reminyl, Reminyl XL, Nivalin, Lycoremine, Galsya Galantamine is indicated for the symptomatic treatment of mild to moderately severe dementia of the Alzheimer type.
Official National Product Information
Memantine Namenda, Namenda XR, Ebixa, Memary, Axura, Akatinol, Maruxa, Nemdatine, Namzaric* Treatment of adult patients with moderate to severe Alzheimer’s disease.
Official National Product Information

*Namzaric = combination of Donepezil and Memantine

Treatment cost

In New Zealand, approved prescriptions have a NZ$5 co-payment, waived for seniors, children, and Community Services Card holders. High-use patients can access a Prescription Subsidy card after 20 items, eliminating charges until February 1 of the following year.

Medications prescribed by approved providers are subsidised, a maximum co-payment of NZ$5 per item. This fee is waived for people 65 years of age and over, children under 14, and holders of a Community Services Card. Prescriptions for unapproved prescribers are NZ$15 but can be reduced to NZ$5 if a person has a High Use Health Card, a Community Services Card or if the prescription is for an oral contraceptive. Once people living with dementia and their families have collected 20 prescription items in a year, they can get a Prescription Subsidy card, which means they won’t have to pay any more prescription charges until 1. February the following year. Residential care services are available and state-funded for individuals who meet specific eligibility criteria, primarily related to long-term disability or age-related conditions. This process involves two separate steps. First, a person’s clinical needs are assessed by Health New Zealand | Te Whatu Ora or a Needs Assessment Service Coordination (NASC) agency; to qualify for residential care, the person must be determined to have high or very high needs that are indefinite. Once the clinical need is established, the second step is to apply for funding through the Residential Care Subsidy scheme, which involves a financial means assessment by the Ministry of Social Development. If the person has assets above the applicable threshold, they are liable to pay for the costs of their care up to the maximum contribution.

Caregiver support

Carers of people with dementia can access support through DSS via NASC assessments. Respite options include day programs, short-term residential care funded by DHBs, or in-home respite, giving carers time to rest.

Carers looking for persons living with dementia can get support from Disability Support Service (DSS) funded by a Health District by contacting Needs Assessment and Service Coordination (NASC) providers to determine the level of need the affected person has. Respite care can be in a day programme or in a residential care facility. In some areas in-home respite is available where care is available in your own home and this gives the carer some time off. While Carers NZ is not exclusive to dementia, this charity focuses entirely on the wellbeing of family carers. They are an essential resource for navigating the logistical side of caregiving. They provide a free “Carers Info Pack,” advice on how to secure respite care (through their “Time Out” guide), and operate a National Carer Resource Centre helpline.

Policy

Building on New Zealand’s foundational, human rights-based Dementia Action Plan—which introduced a strong kaupapa Māori approach to prevention and care—the refreshed 2026–2031 roadmap calls for decisive government investment to fix persistent system gaps. This updated strategy focuses on five key priorities, ranging from timely diagnosis to workforce development, to ensure equitable, culturally safe, and integrated support for all communities across the entire dementia journey.

National dementia plan

The Dementia Mate Wareware Action Plan 2026–2031 is the latest roadmap calling for decisive government investment to address growing system pressures and persistent gaps, such as underfunded regional services, legal barriers, and culturally unsafe mainstream care. To transform the health system, the plan focuses on five priority areas while strongly emphasising human rights and equitable, integrated care for Māori, Pacific peoples, and rural communities from prevention to end-of-life.

The Dementia Mate Wareware Action Plan 2026–2031 is a refreshed five-year roadmap designed to improve the wellbeing of New Zealanders living with dementia and their whānau while decreasing the condition’s overall impact. Led by a collaboration of sector organisations, the plan addresses growing system pressures—including rising prevalence and economic costs—by focusing on five immediate priority areas: promoting brain health, ensuring timely and accurate diagnosis, improving community-based support, strengthening both formal and informal workforces, and establishing effective national governance. It emphasises equitable access for Māori, Pacific peoples, and rural communities, grounding its approach in human rights and integrated care across the entire dementia journey, from prevention to end-of-life. Ultimately, the plan calls for decisive government investment to transform these evidence-based priorities into sustainable health system changes.

New Zealand’s first Dementia Action Plan “Improving Dementia Services in New Zealand 2020-2025” was developed by Alzheimers NZ, Dementia NZ, the NZ Dementia Cooperative, clinicians and academics, it aligns with the World Health Organization (WHO) Global Dementia Plan (2017–2025) and New Zealand’s Healthy Ageing Strategy. The plan’s vision was to prevent dementia as much as possible and ensure people living with dementia, their whānau and care partners can live their best possible lives with autonomy, meaning and dignity. It is grounded in human rights, evidence-informed practice, and a kaupapa Māori approach consistent with Te Tiriti o Waitangi, with an explicit commitment to equity and a dedicated Māori dementia plan co-designed with tangata whenua.

Upcoming plans

No upcoming plans are announced in New Zealand.

Policy gaps

Legal barriers

New Zealand faces a dementia crisis, with numbers expected to double by 2050. Despite the Dementia Mate Wareware Action Plan, implementation is underfunded, creating a “postcode lottery” for post-diagnostic support, navigators, and respite care. Advanced dementia patients without EPA may be detained in secure units without clear legal authority, risking human rights breaches. Setting up an EPA incurs significant legal costs, and without one, families must navigate the slow, expensive Family Court process under the Protection of Personal and Property Rights Act, leaving many unsupported.

New Zealand is facing a significant public health crisis, described as a “national health emergency” as it is “dangerously unprepared” for the number of people living with dementia to double by 2050. Although the Dementia Mate Wareware Action Plan was created to improve support, advocacy groups report its implementation is “woefully under-funded” and “glaringly” incomplete, labeling it an “urgent policy failure”. This lack of a nationally funded and guaranteed strategy has created a “postcode lottery,” where access to vital post-diagnostic support, navigator roles, and respite care is inconsistent and depends entirely on where a person lives. Critically, there is no legal right or guarantee to these community-based services, leaving families and the health system unsupported.

When a person living with advanced dementia who lacks capacity needs to be in a secure dementia unit, they are effectively “detained” or deprived of their liberty. If the person does not have an Enduring Power of Attorney (EPA) for Personal Care and Welfare, or if the EPA is not correctly used, facilities may be detaining people without clear legal authority. This gap can lead to human rights abuses. The NZ Law Commission is currently reviewing adult decision making.

While an EPA is the primary legal tool for future planning, there is no public funding or subsidy for setting one up. The legal cost is a significant barrier for many. If a person loses capacity without an EPA, the only alternative is an application to the Family Court under the Protection of Personal and Property Rights (PPPR) Act, which is a slow, complex, and expensive process.

Cultural barriers

Mainstream health services often lack cultural safety for Māori; reframing dementia as “mate wareware” highlights whānau-centered care, but services frequently fail, causing delayed diagnosis and poorer outcomes.

Mainstream health services are often not culturally safe or appropriate for Māori. The concept of “mate wareware” (as opposed to “dementia”) is an attempt to reframe the condition in a Te Ao Māori worldview, but the services themselves often fail to support whānau-centred models of care. This leads to Māori being diagnosed later and having poorer health outcomes. Older Pacific Island people also receive significantly less funded community support services than European New Zealanders.

Research

In New Zealand, Westpac offers dementia-friendly banking, scientists have created an MRI-based early risk tool, and Alzheimer’s NZ’s EDIE program uses virtual reality to simulate living with dementia, supporting independence, early planning, and increased awareness.

Clinical trials and registries

Australian New Zealand Clinical Trials Registry (ANZCTR) is the main, official registry for all clinical trials conducted in New Zealand and Australia. It is a publicly accessible database recognised by the WHO: https://www.anzctr.org.au/. Health Research Council of New Zealand (HRC) is the New Zealand government’s main agency for funding health research. While it is not a trial registry itself, it funds many of the major trials that take place.

Selected innovative methods

Westpac offers New Zealand’s first dementia-friendly banking, supporting independence, while scientists developed an MRI-based risk tool, and Alzheimer’s NZ’s EDIE program uses virtual reality to simulate living with dementia.

New Zealand scientists have developed a tool that estimates a person’s risk of getting dementia and other age-related diseases. It uses a single MRI scan that can be done in mid-life and before someone is showing any signs of the conditions. Dementia Learning Centre – Alzheimers NZ’s Dementia Learning Centre provides transformative education approaches that leverage technology to support the dementia workforce.

Support

Organizations are listed for informational purposes based on publicly available sources. Inclusion does not necessarily indicate affiliation with or endorsement by Alzheimer’s Disease International (ADI).

New Zealand offers a range of initiatives and resources to support people living with dementia and their whānau. The Safer Walking Framework helps reduce the risk of individuals with dementia, neurodivergence, or disabilities becoming lost, while Nanny Raiha Charitable Trust provides meaningful, brain-stimulating activities that foster connection and purpose. Dedicated media outlets, including Our Mind Matters, Dementia New Zealand’s magazine, and Alzheimer’s New Zealand’s news section, share personal stories, practical advice, and research updates, keeping the community informed and engaged. Together, these programs promote safety, wellbeing, and awareness for people affected by dementia mate wareware.

Selected national associations, patient family associations, NGOs:

Selected initiatives

The initiatives in NZ include the Safer Walking Framework to reduce the risk of vulnerable individuals going missing, the Budget 2022 Dementia Mate Wareware Initiative to pilot care navigation and respite support, the My Life’s Journey platform for digital reminiscence therapy, and the Elli Cares app to foster safe, independent living through reminders and location features.

Safer Walking Framework
An initiative coordinated by Land Search and Rescue New Zealand. It is about supporting, educating, and reducing the risk of people that, potentially or actually, get lost or go missing due to dementia, neurodivergence or disability in Aotearoa New Zealand.
The Budget 2022 Dementia Mate Wareware Initiative
In 2022, seven pilot initiatives were funded, five navigations focussed and two care support/respite focussed. Evaluation of these pilots is now underway. Links to these providers are here: https://www.nzdementia.org/Network-and-Leadership/Budget-2022-Funding.
My Life’s Journey
A New Zealand-built digital platform and app designed to help individuals, particularly those living with dementia, record and preserve their life stories through guided reminiscence therapy.
Elli Cares
Elli Cares is a mobile app developed in New Zealand that supports seniors and individuals with mild cognitive challenges, such as dementia, to live safely and independently. It provides personalised video and text reminders for medications and appointments, Safe Zones with navigation help to prevent wandering, and a shared Care Team feature that keeps families and care partners informed.

Dedicated media outlets

Our Mind Matters is the official magazine of Dementia New Zealand, published to support its community network. It features a wide range of topics, including personal stories, practical advice, and research updates for people living with dementia mate wareware and their whānau.

Alzheimers New Zealand News Section provides relevant news related to dementia and Alzheimer’s Disease.

Harris List has a website which provides dementia resources.

The New Zealand Dementia Foundation has a newsletter.

Understanding the terms

This section explains key terms used throughout the text to help readers better understand the exploration concepts.
Open Term Glossary
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Contents

Understanding the Terms

Terms used throughout this website are explained below.
A

Amyloid-Targeting Therapies (ATT): A class of disease-modifying treatments, primarily monoclonal antibodies, designed to identify and remove amyloid-beta plaques from the brain to slow cognitive and functional decline in early-stage Alzheimer’s. Examples include Lecanemab and Donanemab.

Aphasia: A language disorder that affects a person’s ability to communicate, often seen early in Frontotemporal Dementia.

APOE ε4 Allele: A genetic variant of the Apolipoprotein E gene that is a major risk factor for late-onset Alzheimer’s disease; while not a causative gene, its presence increases the likelihood of developing the condition.

Acetylcholinesterase Inhibitors: A class of medications, including Donepezil, Rivastigmine, and Galantamine, used to treat cognitive symptoms by increasing levels of chemical messengers in the brain.

Advance Directives (DAT): Legal documents, such as Disposizioni Anticipate di Trattamento in Italy, that allow individuals to specify their future medical treatment and care preferences while they still have the capacity to do so.

Alzheimer’s Disease (AD): The most common cause of dementia, characterized by a progressive neurodegenerative decline caused by the accumulation of amyloid plaques and tau tangles in the brain.

Amyloid-beta Plaques: Protein fragments that build up in the spaces between nerve cells, disrupting communication and triggering immune responses.

Amyloid PET Scan: A specialized nuclear imaging test that uses radioactive tracers to visualize and measure the density of amyloid-beta plaques in the living brain.

Atrophy: The wasting away or shrinking of brain tissue, often measured via MRI to support a clinical diagnosis of dementia or Alzheimer’s.

B

Biomarkers: Measurable biological indicators, such as proteins found in blood or cerebrospinal fluid, used to identify the underlying pathology of a disease.

Blood Biomarkers: Emerging, less-invasive diagnostic tests that measure specific proteins like p-tau or neurofilament levels in blood plasma to detect Alzheimer’s pathology.

C

CSF Analysis (Cerebrospinal Fluid): A diagnostic procedure involving a lumbar puncture to measure levels of tau and amyloid-beta proteins in the fluid surrounding the brain and spinal cord.

CT Scan (Computed Tomography): A diagnostic imaging test using X-rays to create detailed cross-sectional images of the brain; used primarily to rule out other causes of cognitive decline such as tumors or strokes.

Clock Drawing Test (CDT): A brief cognitive screening task where a patient is asked to ask to draw a clock face; it evaluates visuospatial and executive function.

Cognitive Screening: The process of using standardized tests to objectively measure an individual’s mental functions, such as memory, orientation, and attention.

Community-based Care: Healthcare and support services provided within the local community, such as daycare centers, home-based nursing, and local support groups, rather than in institutional settings.

Cube Copying Test: A visuospatial assessment task used during neuropsychological evaluations to test a patient’s ability to replicate geometric shapes.

D

Dementia: An umbrella term for a range of neurological conditions characterized by a decline in memory, language, and thinking skills severe enough to interfere with daily life.

Dementia-friendly Society: A community or national environment where citizens and businesses are trained to understand, respect, and support the needs of people living with dementia.

Disease-modifying Therapies (DMTs): A new class of treatments, such as monoclonal antibodies (e.g., Lecanemab), designed to target the underlying biological causes of Alzheimer’s rather than just managing symptoms.

E

Early-Onset Alzheimer’s: A form of the disease that affects people younger than age 65, often linked to the familial genes.

Executive Function: Higher-level mental skills including planning, focusing, and multitasking; these are often what the Clock Drawing Test evaluates.

F

FDG-PET: A type of PET scan that measures glucose metabolism in the brain to identify patterns characteristic of different dementia subtypes.

Familial Alzheimer’s Disease: A rare, genetic form of the disease linked to mutations in specific genes (APP, PSEN1, PSEN2) that typically presents with early-onset symptoms.

Frontotemporal Dementia (FTD): A type of dementia caused by progressive nerve cell loss in the frontal or temporal lobes, leading to significant changes in behavior, personality, and language.

G

General Practitioner (GP): A primary care physician who acts as the first point of contact and gatekeeper for dementia diagnosis, providing initial assessments and referrals to specialists.

Genotyping: The analysis of an individual’s DNA to identify specific genetic variations associated with dementia risk or causation.

H

Hidden Cost: The indirect economic impacts of dementia, such as the loss of income for family members who must reduce working hours or leave their jobs to provide care.

I

Informal Care / Informal Caregiver: Unpaid care provided by family members, spouses, or friends, which represents the vast majority of long-term support for people living with dementia.

J

Japanese Cognitive Function Test (J-Cog): A specialized cognitive assessment tool used to evaluate mental and functional status in specific research or regional contexts.

L

Lewy Body Dementia (LBD): A type of progressive dementia that leads to a decline in thinking, reasoning, and independent function due to abnormal microscopic deposits that damage brain cells.

Long-Term Care Insurance (LTCI): A specialized branch of insurance, found in systems like Germany and Singapore, that provides financial subsidies for daily living assistance and nursing care.

M

Memory Clinic: A specialized, often multidisciplinary center focused on the expert diagnosis, management, and treatment of dementia and cognitive disorders.

Mild Cognitive Impairment (MCI): An intermediate stage between normal aging and dementia where memory or thinking problems are noticeable but don’t yet prevent daily functioning.

Mini-Mental State Examination (MMSE): A 30-point standardized questionnaire used to measure cognitive impairment by testing orientation, recall, and attention.

Montreal Cognitive Assessment (MoCA): A cognitive screening tool designed to be more sensitive than the MMSE, particularly for identifying Mild Cognitive Impairment.

MRI Scan (Magnetic Resonance Imaging): A non-invasive technology using magnetic fields to produce detailed images of brain structure; used to assess brain atrophy and rule out secondary causes.

N

National Dementia Plan: A formal government strategy outlining a coordinated response to manage dementia diagnosis, care, research, and awareness at a national level.

National Health Insurance (NHI): A government-funded or regulated healthcare system providing universal or subsidized medical services to citizens.

Neuroimaging: The use of advanced techniques, such as CT, MRI, and PET, to visualize the structure and function of the brain for diagnostic purposes.

Neuroinflammation: The brain’s immune response to damage or protein buildup; while initially protective, chronic inflammation can accelerate neurodegeneration.

O

Out-of-Pocket Costs: Direct payments made by patients or their families for medical services, tests, or care that are not covered by insurance or public subsidies.

P

Preclinical Alzheimer’s: The stage where brain changes (like amyloid buildup) are present but no outward symptoms are yet visible.

S

Synaptic Loss: The destruction of synapses (the gaps where neurons communicate), which is often the strongest correlate to cognitive decline.

T

Tau Tangles: Twisted fibers of a protein called tau that build up inside nerve cells, destroying the cell’s transport system.

V

Vascular Dementia: The second most common type of dementia, caused by conditions that block or reduce blood flow to the brain, like strokes.