Dementia: Tips on how you can help
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Dementia affects everyone differently and symptoms can vary by person and by day. People living with dementia can continue to do many things, depending on the symptoms. For example, they may continue to:
- work for years after symptoms begin
- take part in social events and favourite activities
- take care of family members
Learn more about dementia by:
- connecting with your local dementia organization such as an Alzheimer Society
- reading, listening to podcasts or watching videos from evidence-based sources
- talking to medical experts, such as:
- nurse practitioners
Uninformed attitudes and beliefs about dementia can result in stigma, which can affect people living with dementia, their loved ones and caregivers. Stigma can:
- cause social isolation
- make people feel alone, depressed and ashamed
- erode someone’s sense of self-worth and belief in their own abilities
To discourage stigma and negative perceptions associated with dementia, you can:
- correct misinformation related to fears about and negative attitudes toward dementia
- learn more about dementia
- help people living with dementia to overcome challenges of stigma by:
- making efforts to include them in conversations and/or activities
- treating them with respect and dignity
- encouraging them to share their experiences
- refuse to accept actions and language that are:
- speak out against inappropriate behaviour directed at people living with dementia
Self-stigma occurs when someone internalizes negative attitudes about a condition and applies those attitudes to themselves. This can cause people who are experiencing potential symptoms of dementia to be less likely to seek help. Self-stigma may result in:
- hiding symptoms
- avoiding discussions with loved ones
- having negative thoughts and feelings
- delaying an assessment that may lead to a diagnosis
People living with diagnosed dementia may hide the diagnosis from others and isolate themselves.
Where stigma comes from
Negative perceptions about dementia can affect how people view, talk about and interact with people living with dementia. In Canada:
- 49% of people worry they may develop dementia
- 64% of people worry someone close to them will develop dementia
- 68% of people agree that others have negative assumptions about the abilities of people living with dementia
- almost 60% of people worry that people would treat them differently if they had a dementia diagnosis
This worry can come from a lack of knowledge, and can be further complicated by:
- age discrimination (ageism)
- cultural and spiritual beliefs
How to communicate
Not everyone experiences the same dementia symptoms nor do they exhibit the same behaviours. As a result, some communication methods may work well for one person living with dementia, but not for another. Something that works well one day may not get the same results the next time.
It’s important to understand the reasons and emotions behind the behaviour you may see in a person living with dementia. Feelings of anxiety, distrust and disorientation can affect how they communicate.
Be aware of how you talk, listen and behave. This will help you to have positive and supportive interactions with someone living with dementia. For instance, approach a person living with dementia from the front, rather than from behind as it may startle them.
While there are many detailed resources available, here are some helpful tips to remember when communicating:
People living with dementia feel emotions, have a sense of self and want to connect with others. Choose words that express dignity and respect. When talking about and with people living with dementia, it is important to use person-centered language by putting the person first rather than the condition. For instance, terms like “a person living with dementia” or “a person with a diagnosis of dementia” are preferred.
Always assume that a person living with dementia is aware and listening. Include them directly in conversations and encourage them to join in where possible.
- words based on negative assumptions such as ‘suffer’, ‘victim’ or ‘senile’
- patronizing language or behaviour
- talking to people living with dementia like they’re children
- talking about them like they aren’t there
When visiting a person living with dementia, it is important to respect their personal space. Ask if they are comfortable with physical contact and be as close to them as is comfortable for you both.
Let people living with dementia finish sentences before responding. Validate what they say to let them know you were listening. For example:
- use phrases like, "Yes, this does seem like a long wait."
- offer verbal and non-verbal encouragement, like making eye contact and nodding
Before moving on, repeat or paraphrase what you've understood. For example:
- "What size coffee do you want?"
- "You want a large coffee today, right?"
- "Great, do you want milk in your coffee?"
- "Yes? Okay, I will add milk to your coffee."
Avoid telling them they're wrong or that you just told them something, as this may confuse or disorient them. Instead, focus on responding calmly and offer encouragement – sometimes all you need to do is just listen and reassure them that you care.
Speak with care
Your phrasing can help to put a person living with dementia more at ease. Even friendly questions like "How are you today?” can make them feel uncomfortable and like they have to answer. "Nice to see you," is a welcoming statement that doesn’t need an answer. Pay attention to how they respond to you and adjust your phrasing accordingly.
When speaking to a person living with dementia:
- introduce yourself and explain why you’re there
- ask clear and simple questions
- use shorter sentences that make one point each
- be patient and give time to respond
- sit or stand to be at the same level and make eye contact
- speak to them directly with words like ‘you’ or ‘your’ instead of ‘they’ or ‘their’
Raising your voice or rushing your words can make people living with dementia feel distressed, frustrated, confused or withdrawn from the conversation.
Use calm and friendly body language, and avoid body language that makes you seem frustrated or annoyed, like:
- rolling your eyes
- crossing your arms
When talking with a person living with dementia, watch for non-verbal cues such as body language, facial expressions, hand gestures and posture. Adjust how you are communicating if needed.
Try to communicate in different ways if they seem confused by what you say. You can:
- use hand gestures, like pointing
- offer to show them what you mean
- print or write out clear directions, with large print and photos if possible
Reduce distractions to help them understand you better:
- Stay still while you talk so they can focus on you
- Move to a quiet place to talk
- Lower the volume of items causing background noise, such as TVs, radios or fans
- Avoid sudden movements
If you can't reduce distractions, do your best to refocus the attention of the person living with dementia on the task or situation. For example:
- "I know it’s loud at the counter. Let's finish bagging your groceries. Then we can go outside to get away from the noise."
Dementia-inclusive communities can support autonomy and freedom for people living with this condition. They help to:
- provide opportunities and encourage people living with dementia to live fulfilling lives
- reduce and eliminate barriers, including those resulting from stigma
- extend how long people living with dementia can remain at home or with their families
- improve the quality of life of people living with dementia, their loved ones and caregivers
- educate the community about dementia
A dementia-inclusive community can include social clubs and faith communities, and can be a place of any size, such as a:
- rural hamlet
- metropolitan city
- First Nations community
- walkable neighbourhood
These communities also provide care and support that:
- is mindful of diversity
- is culturally safe and appropriate
- helps people living with dementia feel:
- supported to live well
Dementia-inclusive communities can be part of age-friendly communities, which help and enable older adults to:
- contribute to their communities
- be and remain as healthy, active and independent as possible
In 2020, more than 1,400 communities across Canada were working on becoming more age-friendly. Using an age-friendly communities model helps older adults live safely, enjoy good health and stay involved.
To make your community dementia-inclusive, you can push for changes in three key areas.
Dementia-inclusive physical environments and infrastructure
Dementia-inclusive communities are easy to access and navigate, and have:
- easily recognisable:
- rest areas
- neighbourhood amenities and services
- open spaces
- activity areas
- landmarks and structures
- crosswalks and signals
- fewer obstructions on or in:
- store aisles
- good indoor and outdoor lighting
- visible, easy-to-understand signs with contrasting colours
- better physical access to and visual access within public areas
- clearly marked and accessible public facilities, like washrooms
Transportation in these communities is affordable and easy to use. For example, buses may use numbers and colour coding to make them easier to tell apart.
These communities have intergenerational housing options available, which:
- lowers social isolation
- supports social inclusion
- improves health and well-being of older adults
- increases older adults’ sense of belonging and self-esteem
- promotes understanding, social connections and respect between generations
Dementia-inclusive social environments
Dementia-inclusive communities help people stay connected to their social networks and participate in community activities like:
- museum tours
- walking groups
- community choirs
Dementia-inclusive community activities are appropriate for the needs of people living with dementia, but participation isn’t always limited to them. This means that other community members can participate.
These activities involve people living with dementia in various ways to support inclusion, such as when developing dementia-related programs or campaigns.
Dementia-inclusive programs and policies
Dementia-inclusive programs and policies support the development of and equal access to:
- health and social care services and programs that provide:
- person-centered care
- timely diagnosis and treatment
- support services that help to maintain independence, such as:
- meal delivery
- personal care
- peer support groups for people living with dementia and caregivers
- inclusiveness programs that reduce stigma, like intergenerational programs
- spaces and organizations that help people living with dementia to safely take part in the community, such as:
- businesses (e.g. banking, retail)
- recreational areas
- healthcare facilities
- government buildings
- entertainment facilities
- faith or worship centres
These programs and policies:
- increase awareness and understanding through education
- improve outreach efforts to people of all ages
- encourage communities to work with people living with dementia
- show how people living with dementia have been included and supported in their communities
- increase employment and volunteer options for people living with dementia in safe and welcoming environments
Canada’s dementia strategy works towards an end to stigma, and all people living in Canada understanding dementia. Different dementia-related projects are supported, including those that:
- aim to reduce stigma
- encourage dementia-inclusive communities
Specific programs include:
These programs fund projects carried out by organizations across Canada and aim to:
- improve the wellbeing of:
- people living with dementia
- family or friend caregivers
- reduce stigma and stigmatizing behaviours
- encourage and support communities to be more dementia-inclusive
- Alzheimer Society of Canada: Stigma against dementia
- Alzheimer Society of Canada: The Canadian Charter of Rights for People with Dementia
- Alzheimer’s Association: Overcoming stigma
- Forward with dementia: Break down myths and stereotypes (for people living with dementia)
- Forward with dementia: Break down myths and stereotypes (for carers)
- Alzheimer’s Disease International: World Alzheimer report 2019: Attitudes to dementia
- brainXchange: Design and Dementia
- brainXchange: Dementia-Friendly Communities
- Alzheimer Society of Canada: Dementia-Friendly Canada
- Alzheimer’s Society Thunder Bay: Becoming dementia friendly: Checklist for a physical environment
- World Health Organization: Towards a dementia-inclusive society: a WHO toolkit for dementia-friendly initiatives
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