Welcome to Dementia–Friendly Communities.
Welcome to Dementia–Friendly Communities.
The Government of Newfoundland and Labrador’s Dementia Friendly website has up to date information and resources about dementia and dementia care in the province.
Information and services provided by the Department of Health and Community Services, in collaboration with the Newfoundland and Labrador Health Services and community partners such as the Alzheimer Society of Newfoundland and Labrador, can assist you and your family to understand and live well with dementia.
Dementia is not a normal part of aging. To learn how to decrease your risk of developing dementia click here.
Dementia is not one specific disease.
Dementia is a term used to describe symptoms affecting memory, thinking, or social skills that interfere with daily living.
Currently there is no cure for dementia.
Although there is no cure, there are resources and supports available for people living with dementia. Treatment options may also be available to help manage dementia symptoms.
A person living with dementia has the right to be treated with respect.
Dementia does not remove someone’s ability to express, respond to, and experience feelings such as anger, fear, sadness, joy, and love.
Types of Dementia
Alzheimer’s disease is the most common type of dementia. It is a brain disorder that gets worse over time as the brain shrinks and brain cells eventually die.
Symptoms: Early symptoms can include forgetting recent events or conversations, and having difficulty recalling new information. Over time, symptoms worsen and may include confusion about time and place, behaviour changes, more serious memory loss, and difficulty speaking and walking.
For more information: what-is-alzheimers-disease.pdf
The majority of people living with dementia are 65 years of age and older, however people can develop dementia at younger ages. Young onset dementia is diagnosed before age 65 and is a diverse condition. Young onset dementia can affect people aged 18 to 64 in different ways and can be caused by several different diseases.
Symptoms:
While many symptoms of young onset dementia may be similar to those of older people living with dementia, such as memory loss or confusion, these symptoms are not often the first signs of dementia. Dementia may affect younger people in different ways. Common symptoms can include:
- Personality changes, such as abruptness or insensitivity.
- Mood swings, paranoia, fearfulness, or depression.
- Challenges with balance or movement and/or difficulty with voluntary movement and physical coordination.
- Challenges with problem solving, learning new things, or adapting to change at home or at work.
- Visual challenges such as recognizing a familiar object, judging speed or distance, and depth perception.
- Frequent lapses of memory, particularly involving recent events.
- Becoming confused with familiar tasks such as the handling of money, paying bills, or placing a phone call.
- Unable to recall appointments, or the names of colleagues at work.
- Unable to find their way home or becoming disoriented in previously familiar places.
- Withdrawing from social contact and activities that were previously enjoyed.
The Alzheimer Society of Canada has a personal symptom checklist for young-onset dementia that may be helpful.
There are some people who may be at higher risk of developing young onset dementia including individuals diagnosed with an alcohol use disorder, and people with Down Syndrome and other learning disabilities.
Lewy body dementia is the second most common form of dementia where protein deposits called Lewy bodies form inside nerve cells in the brain. The Lewy bodies affect areas of the brain that direct thinking and moving.
Symptoms: Symptoms can include memory loss, difficulty planning and organizing, seeing things that not there (visual hallucinations), and changes in attention. Some people may experience Parkinson’s disease symptoms including rigid muscles, slow movement, difficulty walking and tremors.
For more information: Lewy-Body-Dementia-Alzheimer-Society.pdf
Frontotemporal dementia primarily affects the frontal and temporal lobes of the brain. These areas of the brain are associated with personality, behavior, emotions, language, speech, abstract thinking, and movement. Frontotemporal dementia tends to occur at a younger age, often beginning between the ages of 40 and 65.
Symptoms: Symptoms depend on which area of the brain is affected. Some people can have changes in their personalities and may become socially inappropriate, impulsive, or indifferent. Other people may experience changes with speech or movement.
For more information: other-dementias_ftd.pdf (alzheimer.ca)
Dementia affects everyone differently, but there are some common signs to be aware of. Try the interactive quiz below, developed by the Pan American Health Organization and World Health Organization to explore the signs of dementia.
Note: This is not a test for dementia. If you would like to talk with someone about any concerns, contact a health care provider.
People living with dementia can lead meaningful lives for many years after an early diagnosis. Dementia diagnosed early helps both the person and family members to learn about the disease, set realistic expectations and plan for their future together. An early diagnosis allows people to decide and discuss future care and treatment. It also helps them, and their families receive information and guidance as they enter their dementia journey.
A diagnosis of dementia is also important to rule out other potential causes of symptoms and start appropriate treatment. Several conditions can cause memory loss and symptoms similar to dementia. It is important to talk to a health care professional if you are concerned about your memory or thinking skills.
For more information: Benefits of an early diagnosis – alzheimer.ca
Advance Care Planning is an ongoing process where you share your wishes and instructions for future health-care treatments.
Your Advance Care Plan can include:
- Clear instructions about your health care that you want to be followed.
- The name of the person you would like to make your medical decisions for you if you cannot make your own. This could be for a short time if you have an accident or illness, or permanently if you lose the ability to make decisions. This person is called a Substitute Decision Maker.
The steps to making an Advance Care Plan include:
- Think about what is important to you and what you understand about your health.
- Learn about your health, medical treatments, and options.
- Decide who will speak for you when you cannot speak for yourself.
- Talk with those close to you and your health care provider.
- Record your wishes.
For more information: ahcd-booklet.pdf
5 Steps of Advance Care Planning
Legal, financial, and estate planning are also important steps to consider.
There is no single test for dementia and a diagnosis can take time. To diagnose dementia, a health care provider will do a physical examination, memory test, ask questions about your life and any medications you take. You may need several visits to a health care provider to confirm a dementia diagnosis.
There is currently no cure for dementia, but there are treatments that may help manage symptoms. Non-drug therapies may help manage symptoms (ie. staying socially connected through book clubs or intergenerational events, counselling, art, and music programs). Medications may also help temporarily improve mental function, mood, or behaviour.
Dementia is progressive, meaning symptoms may be mild at first but get worse over time, usually over several years. Dementia affects everyone differently, however the symptoms of dementia can be thought of as progressing in three stages – early, middle, and late. These stages can be used to understand how dementia symptoms may change over time and to help people prepare and plan for the future.
The stages of dementia are simply a guide. Not every person with dementia will experience all symptoms. Knowing when a person’s dementia has progressed to another stage can be difficult because the symptoms may appear in a different order, stages may overlap, and some symptoms, such as behaviour changes, may develop at one stage and then disappear at another.
No matter how a person’s dementia changes over time, there are ways to live well with the condition. Good support can improve the person’s quality of life at all stages of dementia.
In all stages of dementia, it is important to focus on remaining abilities. There may be things a person living with dementia can do to keep their abilities longer including:
- Maintaining a positive outlook.
- Accepting help when needed.
- Eating and sleeping well.
- Staying physically, mentally, and socially active.
- Managing health conditions.
- Limiting alcohol and avoiding smoking.
- Staying up to date with vaccinations.
In the early stage of dementia, symptoms are usually mild. Many people live independently and may only require some assistance with daily living. At this stage, many people choose to make advance care and financial plans.
Common symptoms during the early stage of dementia may include:
- Memory challenges can be an early symptom in dementia but not always.
- Difficulty thinking things through and planning.
- Difficulty learning new things and following conversations.
- Changes in speech.
- Poor orientation, a person may not recognize where they are.
- Changes in mood including feelings of frustration, irritability, anxiety, sadness, or depression. A person may lose interest in hobbies they usually enjoy.
As dementia progresses into the middle stage, symptoms often become more noticeable. The person will need more help with daily living which may include frequent reminders, and assistance with bathing and cooking.
Some people choose to have a home support worker come to their home to help with activities of daily living. Others may choose to move into care settings that offer support such as a personal care home.
Common symptoms during the middle stage of dementia may include:
- Worsening challenges with memory. Some people find it hard to recognize family and friends.
- Increased challenges with orientation. Some people could be confused about where they are, even at home.
- Increased confusion, difficulty organizing thoughts, or following logic.
- Challenges with speaking or understanding what others are saying.
- Changes in mood including anxiety, suspiciousness, sadness, anger, apathy, or sense of loss.
- Changes in behaviour which can include following, hoarding, losing items, loss of inhibitions, restlessness, social withdrawal, or repetitive behaviours.
- Delusions (believing things that are not true).
- Hallucinations (hearing, seeing, or smelling things that are not there).
- Disturbed sleep patterns.
- Changes in movement and coordination.
The late stage of dementia may impact most aspects of a person’s life. The person often needs full-time care and support with activities of daily living including eating, bathing, toileting, and dressing. Support can be provided at home, in personal care homes, or long term care homes.
Common symptoms during the late stage of dementia can include:
- Increasing challenges with memory. People may stop recognizing familiar places, objects, and people.
- Reduced interest in activities.
- Loss of concept of time.
- Changes in behaviour.
- Difficulty with speech or language. A person’s language may be reduced to a few words; however, they may use non-verbal communication to express themselves.
- Loss of the ability to bathe or walk without help.
- Difficulty swallowing.
A dementia friendly community focuses on creating cities and towns that are better places to live for anyone with dementia. The goal is to support people living with dementia stay active in their communities.
A dementia friendly community respects and supports people living with dementia and their essential care partners. An essential care partner is someone who provides physical, psychological and/or emotional support.
These communities understand the changes that come with dementia, how they may impact community life, and take action to make spaces more inclusive.
These communities allow people living with dementia and their essential care partners to:
- Support their health and well-being,
- Live as independently as possible,
- Be supported,
- Safely live in their communities, and
- Stay socially active.
Dementia friendly communities promote a better understanding of dementia, reduce stigma, raise public awareness, and encourage social inclusion and participation.
Becoming dementia friendly can include setting up new services in your community or making changes to current services to make it easier for those living with dementia to participate safely and comfortably.
How communities become dementia friendly will be as varied and diverse as the communities themselves, however, all dementia friendly communities involve those living with dementia and their essential care partners in planning and decision making.
Communities may find it helpful to have a team work together as they take action to become dementia friendly. This team might include your local town council, representatives from recreation groups, faith-based organizations, or public library.
Becoming Dementia Friendly — Actions to Consider
People living in the community need to understand dementia to be able to respond appropriately, therefore providing dementia awareness and education is a key step to becoming dementia friendly. Stigma can be reduced when community members understand dementia, how it progresses, and know that a person with dementia can sometimes experience the world differently.
Businesses and other key organizations such as libraries, financial institutions and recreational facilities can adjust their spaces and policies to allow those living with dementia remain valued customers and patrons. Training can ensure local service providers understand how they can support a person living with dementia.
People living with dementia may experience social isolation after a diagnosis. A volunteer program that supports people living with dementia to stay involved in the community can be important in the person’s life.
To create dementia friendly communities that last, your community can explore creating dementia friendly generations by encouraging young people to become dementia aware. Increasing youth awareness of the condition may lead to increased understanding.
First responders are likely to encounter people living with dementia in crisis or emergency situations. First responders play a vital role in keeping people living with dementia safe in communities. Providing dementia training to first responders can give them strategies on how to recognize, communicate with and respond to someone living with dementia
The physical environment includes spaces such as streets, parks, and stores. How we design these spaces determine if people living with dementia find their community dementia friendly. Design features that can support people living with dementia include quite spaces, signs with clear print hung at eye level, well-lit entrances, non-slip floor surfaces, and available seating to rest.
Dementia friendly communities support people living with dementia to stay active in their community by providing meaningful opportunities to meet and engage with others. This could be through offering new services for those living with dementia such as memory cafes and music programs or adjusting current services to make them more inclusive for those living with dementia.
Providing opportunities for family members and essential care partners to connect, share information, and learn from each other is valuable.
If you are interested in making your community dementia friendly, you could:
- Work with community members to plan ways to become more dementia friendly.
- Volunteer with the Alzheimer Society of Newfoundland and Labrador.
The words you use to speak or write about dementia have the power to shape how people living with dementia are viewed and treated in their communities.
The words we hear and read can affect mood, self-esteem, and feelings of happiness and belonging.
Your word choice influences the people listening. Those words can either reinforce stigma and discrimination or show appreciation for diversity and help create communities where people feel supported.
People will express their dementia journey in ways that have meaning to them. Not everyone will want to have their experiences with dementia described in the same way. Where possible, ask that person directly.
Preferred Terms:
People living with dementia.
Not Preferred Terms:
Sufferer, demented, senile, victim, patient.
Preferred Terms:
Challenging, life changing, stressful.
Not Preferred Terms:
Devastating, hopeless, tragic.
Preferred Terms:
Responsive behaviour.
Not Preferred Terms:
Aggression.
Preferred Terms:
Age-appropriate language (e.g., clothing protector).
Not Preferred Terms:
Language used for children (e.g., bib), patronizing language (e.g., dear, sweetie).
Preferred Terms:
Essential care partner. Impact of supporting.
Not Preferred Terms:
Burden of caring.
Preferred Terms:
Young onset dementia.
Not Preferred Terms:
Early onset dementia (to avoid confusion with the early stage of dementia).
Preferred Terms:
Dementia as a condition, a participant (in a research trial), a person/people with a diagnosis of dementia.
Not Preferred Terms:
Illness, subject, case, disease (unless speaking of a specific disease such as Alzheimer’s disease).
Dementia risk increases with age however, there are things you can do to keep your brain healthy and reduce your risk of developing dementia.
These include staying active, eating healthy and exercising your mind. It is never too early or too late to reduce your risk of developing dementia.
Smoking and excessive alcohol consumption are harmful to brain health. Seek support to reduce or quit smoking (Smoker’s Helpline) and limit alcohol intake.
Exercise is great for the brain. Being physically active is important for brain health and to reduce your risk of developing dementia. Thirty minutes of exercise such as brisk walking five days a week, can improve your health, help you stay strong, and maintain independence.
What we eat can affect our brain function. A diet rich in fruits, vegetables, legumes, whole grains, lean proteins, and healthy fats can help maintain brain health.
Challenging the brain with new activities can decrease your risk of developing dementia.
Activities such as playing board games, reading, playing a musical instrument, or doing crossword puzzles can be fun and benefit brain health.
Staying socially active by volunteering in your community or visiting friends and family may reduce the risk of dementia and slow down the progression of the disease.
High blood pressure, high cholesterol, and diabetes can all affect your brain health. Managing these conditions can decrease your risk of developing dementia.
Serious brain injuries can increase your risk of developing dementia. Take precautions to prevent head injuries, especially during activities with a higher risk of falls.
People with hearing loss may have a higher risk of developing dementia. Early treatment of hearing loss, and interventions such as use of hearing aids, have been shown to decrease this risk.
Dementia causes changes to the brain that, over time, may make it difficult for people living with dementia to say what they want or understand what others are saying. This can lead to feelings of frustration for the person living with dementia and those who care about them. There are steps you can take to reduce misunderstandings and improve communication with someone living with dementia.
- Speak slowly and clearly, without being patronizing.
- Use a positive, calm, and respectful voice.
- Use short simple sentences.
- Talk in a quiet, distraction-free place.
- Give your undivided attention.
- Avoid criticizing or correcting.
- Ask yes/no questions rather than open-ended ones.
- Be patient, allow time for them to speak.
- Focus on one question at a time.
- Break down instructions into small steps.
- Repeat the names of people and things rather than using ‘him’ or ‘it.’
- Get hearing checked regularly.
- Approach from the front, without crowding their personal space.
- Maintain eye contact.
- Demonstrate actions and tasks or point at the things you are talking about.
- Write messages on paper.
- Watch for body language cues.
- Be mindful of your own body language.
- If the individual is open to receiving affection, hold or pat their hand or arm reassuringly to offer encouragement and express you care.
- You may need to guess or interpret based on what you hear and see.
What are normal changes with aging?
As we age our brains change. Some people might have mild memory loss that does not affect their day to day lives. Forgetting the name of a neighbor, occasionally forgetting things, or sometimes having difficulty finding words can be a normal part of aging.
Others may have memory loss that affects their lives and may be a sign of dementia. Family and friends may be the first to notice memory loss. Signs of more significant memory loss include not being able to remember details of recent conversations or not remembering how to perform a familiar task.
While memory loss is a common symptom of dementia, other changes in thinking and behaviour can also be symptoms of dementia.
The World Health Organization developed this quiz on the warning signs of dementia: PAHO/WHO | Dementia: Warning signs.
Signs of young onset dementia, occurring before age 65 can be found here: young-onset-dementia-personal-symptom-checklist.pdf (alzheimer.ca)
When should a health care professional be contacted?
Contact a health care provider if you or a person you are close to has new and concerning memory loss (that is more than occasional forgetfulness), difficulty with speech, performing several tasks at once, or difficulty following a plan.
If a person suddenly becomes confused or upset or does not seem to know who or where they are call your health care provider or 811 immediately. These could be signs of a medical emergency.
How are health and financial plans made?
It is recommended that all adults have legal, financial, and advance care plans in place. Advance care plans allow people to make decisions on their health and end-of-life care. Give the completed advance care plan to your doctor, family, and friends. This advance care plan form is found here.
A lawyer or financial institution can assist with estate and financial plans.
What services may help?
Talk to your doctor or health care provider if you have questions or concerns about your health.
If you or a family member are without a primary care provider (Family Doctor or Nurse Practitioner), or will be without a provider in the next 3 months, please register with Patient Connect NL (PCNL). PCNL is a provincial list of individuals who have identified as being without a primary care provider (PCP) in Newfoundland and Labrador (NL).
Registration is open to all patients without a PCP in NL. If you would like to be connected to a Family Care Team or a PCP in your area, please register online by clicking here. If you do not have Internet access you can contact 1-833-913-4679 to register by phone. Please use your MCP information when you register. Once your registration has been completed, you will be provided a reference code confirming that you have been registered. If you enter a valid email address, a confirmation will be sent to that email address. If you need assistance using Patient Connect NL or registering, please call 1-833-913-4679 or see the Quick Reference Guide. Video Relay Service (VRS) calls are welcome.
The Alzheimer Society of Newfoundland and Labrador can provide information (709) 576-0608.
There are three main stages of dementia: early, middle, and late. Dementia affects everyone differently so it is impossible to say how long each stage will last.
In the early stage of dementia, most people can continue to live independently. The early stage could last for months or years depending on the type of dementia, the person’s age, and how early they were diagnosed.
How can well-being be supported?
Support people living with dementia to stay socially and physically active and look for ways to modify favorite activities rather than give them up. Encourage the use of long-time skills, like playing the piano, singing, crafts, or reading. Encourage family and friends to visit often.
Is it safe to continue driving?
Most people in the early stages of dementia can continue to drive safely and competently. However, it is important to be aware of any changes in driving patterns that may make it unsafe to drive. When driving abilities change consult your health care provider.
For more information: Driving with Dementia.
Is it safe to live alone?
Everyone experiences dementia differently; however, with the right support many people live on their own for several years after diagnosis.
For more information: Dementia and Living Alone.
Is there financial support for care?
Subsidies for care are available based on income and needs identified in a clinical assessment. Newfoundland and Labrador Health Services staff can complete an assessment to see if you are eligible for financial assistance.
What services may help?
Alzheimer Society provides support for families and those living with dementia including providing information, support groups, programs, and community services.
The Community Support Program helps people live independently at home for as long as possible by providing services such as personal care, homemaking, respite care and behavioural support.
The Special Assistance Program provides medical supplies and equipment to assist with daily living.
Action Steps
See your health care provider if you have concerns.
Complete an advance care plan.
Complete financial and estate plans.
Continue doing activities you enjoy such as volunteering, working, art, music, yoga, or reading.
In the middle stage of dementia individuals typically have increased needs for care and support. Contact Newfoundland and Labrador Health Services for an assessment to determine which services and supports may be helpful.
How can well-being be supported?
Staying active is important, go for regular walks together, encourage participation in every day activities such as vacuuming, folding laundry, or gardening. Simplify tasks and activities by breaking them into smaller steps. Provide kindness and understanding. Encourage family and friends to practice communication tips here.
How can the home be made safer?
Small changes to the home can have significant benefits for people living with dementia. Changes may include removing tripping hazards, ensuring the home is well lit, installing safety equipment in the bathroom, installing anti-scald devices on taps, and using appliances that automatically turn off. A healthcare professional may be able to provide a home safety evaluation to make the home safer or visit the Canada Safety Council for more information.
Where to get help coping with behaviour changes?
Through the Community Support Program, individuals can receive behavioural support from health care professionals in the health zones.
Is there financial support for care?
Subsidies for care are available based on income and needs identified in a clinical assessment. Newfoundland and Labrador Health Services staff can complete an assessment to see if you are eligible for financial assistance.
What services may help?
Alzheimer Society provides support for families and those living with dementia including providing information, support groups, programs, and community services.
Therapeutic Services for support from occupational therapists or behavioral management specialists.
The Home Dementia Care Program for support with medical concerns for people with dementia who live at home.
- Western: (709)-634-6667 or homedementiacare@westernhealth.nl.ca
- Central: (709)-424-0534 or home.dementia@centralhealth.nl.ca
- Eastern: (709)-777-2462 or home.dementiacare@easternhealth.ca
The Community Support Program helps people live independently at home for as long as possible by providing services such as personal care, homemaking, respite care and behavioural support.
Respite care provides short-term relief for essential care partners (caregivers).
Personal Care Homes are a live-in option for people requiring assistance with personal care.
Action Steps
See your health care provider if you have concerns.
Complete an advance care plan.
Complete financial and estate plans.
Continue doing activities you enjoy such as volunteering, working, art, music, yoga, or reading.
In the late stage of dementia individuals may be completely dependent for personal care activities. They may enjoy companionship or music and may respond to physical touch.
How can quality of life be promoted?
You may need to find different ways to communicate with those in late stage of dementia, including non-verbal communication. Try to maintain simple routines with a mix of rest and activity such as getting outside for a walk or sitting on a porch. Talk about important life events, look at photos or videos, and encourage family and friends to visit. Provide kind words and comfort.
Is there financial support for care?
Subsidies for care are available based on income and needs identified in a clinical assessment. Newfoundland and Labrador Health Services staff can complete an assessment to see if you are eligible for financial assistance.
What services may help?
Alzheimer Society provides support for families and those living with dementia including providing information, support groups, programs, and community services.
Therapeutic Services for support from occupational therapists or behavioural management specialists.
Home Support Services helps people live independently at home for as long as possible by providing services such as personal care, homemaking, respite care and behavioural support.
Respite care for short-term relief for essential care partners (caregivers).
Personal Care Homes for people wanting to receive live in care in their community.
Long-Term Care for those needing 24-hour nursing or medical care.
Action Steps
Determine care options needed.
Provide comfort.
Consider a support group or emotional support needs for yourself.
Palliative care is a holistic approach to care that focuses on improving comfort and quality of life from diagnosis to the end of life. Palliative care can help manage symptoms, help with grief, offer individual and care partner support, and assist with emotional and spiritual needs. Palliative care can be provided in the setting of one’s choice, including home, hospital, hospice, personal care home, or long-term care facility.
How can comfort be provided?
Provide companionship – talk, read to them, play their favorite music, rub lotion with a favorite scent into the skin, watch movies together, or simply sit and hold their hand.
Is there support for grief?
Grief and bereavement services are offered through Newfoundland and Labrador Health Services.
Additional grief and bereavement are support available on-line, at:
Is there financial support for care?
Subsidies for care are available based on income and needs identified in a clinical assessment. Newfoundland and Labrador Health Services staff can complete an assessment to see if you are eligible for financial assistance.
What services may help?
Newfoundland and Labrador Health Services offers palliative care services including patient navigators, grief support, end of life care at home, pastoral care, and other community-based support (services vary by zone).
Contact information for these services can be found here.
NEW Provincial Dementia Care Navigator
The provincial dementia care navigator provides guidance and support to individuals living with dementia, their families, and caregivers. They help connect people to resources, services, and information related to dementia care. This service is available to individuals, families, and professionals in Newfoundland and Labrador.
How to access this service:
Phone: 1-833-423-1913 or 1-709-732-1432
Email: dementia.navigator@nlhealthservices.ca
The Dementia Friendly Communities Program is delivered in partnership with the Department of Health and Community Services. You can learn more about the Department and their vision for a healthier Newfoundland and Labrador at the following link: www.gov.nl.ca/hcs/.
Funding for the Dementia Friendly Communities Initiative was provided in part by the Public Health Agency of Canada.
The views expressed herein do not necessarily represent the views of the Public Health Agency of Canada.