FAQ's

The long-term nature of rare or young onset dementia requires renegotiating of family boundaries, roles and expectations. These changes can be challenging as individuals begin to take on roles that they may not have expected or that bring up challenging feelings. Managing this type of transition in roles may require: 

• Acknowledgement and acceptance of your feelings around the change 
• Sharing your experience with family, friends, or people with shared common experiences 
• Developing safe coping strategies for when thoughts or feelings arise and are difficult 

With these changing roles comes the need to build safe coping strategies that you may not have used before. You may want to build these skills with the help of your health care practitioners, a therapist in your local area, or through the support services of RDS Canada, you may reach out at any time to discuss challenges and our direct support team can help you connect to what you need. 

A rare or young onset dementia diagnosis brings with it psychological, biological and interpersonal challenges and needs. Commonly people living with a dementia may experience low mood, sleep disturbances, anxiety, changes to speech, changes to sight and perception and changes to personality or behaviour. 

All these changes have the potential to impact social interactions with others. It is possible that not all friends may understand the experiences of those affected by a rare or young onset dementia diagnosis.

There are both psychological and emotional impacts of a dementia diagnosis. It is usual to experience grief, loss, shock or disbelief, feelings of anger, sadness, fear and even sometimes relief. It is normal to have a wide range of emotions after a diagnosis.   

Acknowledging and accepting emotions can be a first step in safe coping. This can include:  

• Knowing that there are a wide range of emotions that are normal after a diagnosis,  
• Setting aside or “burying” your emotions is an unhelpful coping strategy and may make it harder to cope as the disease progresses,  
• Acceptance of the feelings, thoughts and sensations you are experiencing can help you care for yourself and seek out the social, emotional and practical support that you need.   
• Acknowledging and accepting emotions is a part of living well with dementia 

If you are finding it challenging to acknowledge, understand and accept the thoughts and feelings you are be experiencing you may want to reach out to your health care providers, a trusted friend of family, or to RDS Canada to take part in individual, couple, family or group sessions. 

The Alzheimer Society of Canada offers this booklet on common emotions and coping strategies. While they acknowledge that the booklet has been created specifically for people with Alzheimer’s disease it can provide helpful information to people with different types of rare or young onset dementia: 

Shared Experiences / Alzheimer’s Society 

There are many different types of health and social care supports that are effective for people living with rare or young onset dementia. Here are a few sources of support that people have found helpful: 

Occupational Therapy 

Occupational therapists can help with everyday tasks and are a helpful resource in determining where help may be needed. For example, when the challenges of rare or young onset dementia include challenges with dressing, navigating a home or executive function, an occupational therapist can help to set up systems and strategies to mitigate such challenges. Occupational Therapy may be available in your community via private practitioners and/or through your provincial health system. We recommend talking with your primary care provider for a referral, if you are covered by any form of health benefits you may have coverage for occupational therapy. 

Physiotherapy 

Physiotherapists can aid with movement. This can help to reduce the risk of injury from falls and other occurrences. Physiotherapists can also provide education and tailor exercises to help maintain strength. Physiotherapy may be available in your community via private practitioners and/or through your provincial health system. We recommend talking with your primary care provider for a referral, if you are covered by any form of health benefits you may have coverage for physiotherapy. 

Speech and Language Therapy with a Speech and Language Pathologist 

Speech and Language Pathologists are health professionals who identify, diagnose and treat communication and swallowing challenges across the lifespan. This can include articulation, phonology and motor speech challenges. Speech and Language Pathologists may be of assistance with communication overall and when language is impacted by a rare or young onset diagnosis, such as with primary progressive aphasia. Speech and Language therapy may be available in your community via private practitioners, through a community aphasia service and/or through your provincial health system. We recommend talking with your primary care provider for a referral, if you are covered by any form of health benefits you may have coverage for speech and language. 

Home and Community Care for home care and respite 

Home and community care services help people to receive care at home. Designed to keep people living at home longer, rather than in hospital or long-term care, home and community care services assist with activities of daily living and respite for caregivers. The services are delivered by a team that is comprised of regulated health care professionals (nurses), non-regulated workers (such as PSW’s), volunteers, friends and caregivers. In Canada most home and community care services are delivered through the provincial, territorial and sometimes municipal governments. The federal government administers home care services to First Nations on reserve, Inuit Peoples in designated communities, as well as armed forces, RCMP, and eligible veterans. Home and community care services may include nursing, personal care, physiotherapy, occupational therapy, speech therapy, social work, social work, dietitian services and respite care. 

Most provincial home and community care services will take self-referrals for service. Referrals may also be made through your primary care provider. 

Dementia Alberta is an excellent website with information on supporting employees, talking to your employer, making employment decisions and more. 

How relationships at work can help 

Many members tell us it is beneficial to think about financial and legal affairs as soon as possible. Some people encounter difficulties in trying to make arrangements further down the line when it is less clear whether they have the mental capacity to do so (this refers to your ability to make your own decisions based on your understanding, communication and ability to remember the decision). Therefore, we would always recommend making arrangements before your mental capacity can be called into question. Organizing your financial and legal affairs also allows you to have peace of mind that all issues can be dealt with in the way you have chosen. 

You may wish to consider the following issues: 

• Arrange bills to be paid by direct debit and benefits to be paid directly into the bank accounts 
• Consider joint bank accounts 
• Seek advice from a lawyer or financial advisor if needed 
• Make sure you are receiving all the benefits to which you are entitled 
• Make a will 
• Consider arranging a Power of Attorney 

Eligibility and process for accessible parking passes will be determined by each individual province. Generally, to receive an accessible parking pass you will need to have your primary health care practitioner certify that you match the provincial criteria for the pass. In most provinces there are different types of accessible parking permits, you may be most eligible for a permit for a permanent disability. If you are traveling outside of your province, you may also be eligible for a traveler’s permit, details regarding traveler's permits can be found on the individual provincial websites. 

Transport Canada has federal regulations that require mutual recognition of parking permits for persons with disabilities in all provinces and territories. Information from Transport Canada, and links to all provincial applications for accessible parking permits may be found here: Mutual Recognition of Parking Badges Agreement for Persons with Disabilities 

Often there are adaptations that can happen at home that can make it easier to move around the house. It can be helpful to talk with an Occupational Therapist in your home community about what changes you may be able to make in order to maintain independence in the home. Examples of adaptations can include installing rails in the bath or shower, arranging furniture so that it is easier or safer to travel from one room to another, lighting arrangements that may allow the person living with dementia to navigate more easily. This type of information sharing is a common content in our support groups. 

If you, or someone you know, could benefit from talking to one of our support specialists please register for membership and we will follow up with more details, our support specialist can also help you to discover where you may be able to access occupational therapy in your own community. 

If you need to make physical changes in your home there may be province specific funding for these types of changes, additionally you may be eligible for tax credits or deductions available to persons with disabilities. 

Lots of people have said that they find cooking increasingly difficult as their dementia progresses. Although it is something that we can take for granted, cooking is a complex process with many steps to follow. We need to hold information in memory, sequence actions that are happening at different times and follow instructions. It is not surprising that cooking can be affected by several different types of dementia. Some people living with dementia talk about cooking as part of a pair so that the person with dementia can focus on the task while a support person may oversee coordinating the cooking process, this can help to ensure safety when the stove is being used. 

When using a gas stove for cooking one option for safety is a locking cooker valve (LCV). This simple valve is fitted to your stove and can be locked to stop the gas supply thereby eliminating the risk of the stove being turned on and/or left on. LCV’s are widely available for purchase through major appliance and hardware stores in Canada. It is important to note that LCV’s need to be installed by a professional. 

One option in this case is to look at a medical alert, or medical ID for the person. Medical Alert is a Canadian Foundation that provides medical alert products with an internationally recognized symbol. Paramedics, Fire Fighters and Police are all trained to look for medical alerts. There are some specifically designed for people who are exit seeking and/or living with a memory-led dementia. The custom medical ID jewelry provides access to medical information stored on a secure electronic record, 24/7, 365 days of the year. You can find out more on the Medial Alert website. 

Both wandering and falls have been identified as a primary concern for family and friends of persons living with a diagnosis. For further discussion on safety and preventative practices family members and friends may consider registering with Rare Dementia Canada for attendance at a Family and Friends Virtual Support Group. 

There are several things that can increase the likelihood of falls, such as: low blood pressure, mobility and balance issues, visual impairment and taking medications that may increase drowsiness. If you are concerned with fall, or think your falls risk has increased, please consider talking with your family doctor. It is important to try and minimize these risks where possible, such as: using mobility aids, ensuring good lighting around the home and ensuring medication is monitored closely. 

There are some challenges with sight and mobility that are unique to the different rare and young onset dementia diagnosis. Safety and mobility is a common part of discussions during our diagnostic specific support group sessions. If you would like to register for groups or talk to one of our support specialists, please register for membership to do so.   

The Public Health Agency of Canada offers information on fall prevention on their website, you may also find services from your local health unit. 

You CAN Prevent Falls! 

It is important to note that walking can be a huge source of independence, as well as a good form of exercise, and people living with dementia have shared that they want to maintain independence with walking if it’s safe to do so. This is why it’s important to look at alternatives to ending a walking routine by building safety tools when needed. There are several Apps and GPS locating devices available for use in Canada. Assistive technology can improve independence, safety, communication and well-being for persons living with dementia. 

Assistive technology also has the potential to reduce the stress and worry that may be felt by family or friends. Assistive technology has been shown to reduce the risk of falls and accidents. These tools can be used to help find someone when they are out walking if there is a concern they may be lost. For example, you can use: watches with a GPS Tracker, Tiles. 

Further additional information on assistive technology and home safety have a look at the Alzheimer Society of Canada and Forward with Dementia websites: 

• Locating devices | Alzheimer Society of Canada 
• Online safety | Alzheimer Society of Canada 
• Making your environment safe | Alzheimer Society of Canada 
• Managing symptoms and changes | Canadian EN (forwardwithdementia.ca)