Learning how to deal with feelings, staying connected and accepting help
A diagnosis of dementia and the journey that follows can be overwhelming: it’s normal to be experiencing feelings like guilt, anger, stress, and fear. Sometimes, the person living with dementia and their caregiver can become very isolated: staying connected with your circle of friends and family can help you both stay healthy and provide meaningful times.
The information in this section can help you if you’re asking yourself questions like:
- Is it normal to feel this way?
- I feel guilty and overwhelmed, how can I cope better?
- My family says I seem stressed, I might be, but what do I do?
- How can I take a break if my family member will not accept other people or attend programs?
- What local programs are available to help?
- My friends say to call them if I need them, but how do I start that conversation?
- What should I say about my diagnosis to family and friends?
- I want to focus on my health, where do I go to join a program?
- I want to meet others who are facing the same issues, how do I do that?
- How do I find meaningful activities to help me stay connected?
- How do we talk about intimacy in our relationship?
- Are you getting exhausted, are you using respite services to rejuvenate your energy?
Understanding that you’re not alone: The Dementia Society of Ottawa and Renfrew County, in partnership with the Champlain Dementia Network and the Champlain CCAC launched a video titled No Thanks, We're Fine: Supporting Families Living with Dementia. This video features the compelling stories of caregivers of people with dementia who share their experiences and encourage their fellow caregivers to seek community supports with the core message - that no caregiver is alone and that everyone should seek help. This video also includes interviews with medical and community experts in Champlain region.
Finding someone to talk to: Sometimes family and friends may be unable to support you through these feelings. Often, talking to a professional can help:
- Your local Alzheimer Society can also help you if you need someone to talk to: see the local resources on this page to find your nearest Alzheimer Society
- Telehealth Ontario: From the Government of Ontario provides after hours dementia caregiver support. Toll-free: 1-866-797-0000.
- Mental health Crisis Line. Services for people age 16 and over living the Champlain region (Renfrew County, Ottawa, Stormont Dundas Glengarry, Prescott Russell). Family, friends and individuals who are experiencing mental health crises.
The local resources we list on this page give a brief description of the different types of services available for people in their homes and communities. They include community support services, respite options like Adult Day Programs, and programming offered through your local Alzheimer Society.
There are things you can do to make sure you have the help you need in place:
- A list of what support you need and who can possible help whether family, friends or community program.
- Contact list for all local programs, services and activities
- Contact list for your “circle of care” family and friends and their time availability.
- Calendar scheduled with caregiver programs, breaks or respite care
- A plan for the introduction of respite (the earlier in your journey the better)
- See the local resources box for in-person, local supports that are available to help people living with dementia and their caregivers
- For persons with dementia having difficulty accepting their increasing care needs and with possible challenging behaviors, see “Behaviors and Communication” (hyperlink to page)
There are different times where you will feel overwhelmed, stressed, and sad. The links we share in the online resources section may give you some ideas and support when it comes to living well with dementia, including maintaining physical and emotional health, intimacy in relationships, and changing relationships with family and friends
See also the section “Finding someone to talk to”
If you are concerned that caregiving is affecting your own physical and emotional health, please talk to your family doctor or a physician in order to stay as healthy as possible for yourself and your loved one with dementia.
- If you the 65 years of age or older and experiencing your own changes in mood, sleep, appetite and daily functioning, you may want to speak to your family doctor about being referred to specialized mental health services: These services generally include:
- Global assessment of mood, cognition, function, safety and behavior
- Non-pharmacological recommendations (such as education, referral to services, care strategies) and, as needed, pharmacological recommendations to optimize function and decrease caregiver burden.
There is a lot of information available through internet which can be confusing and difficult to navigate. You can follow the links below to find resource material that will help you in dealing with some of the feelings you’re experiencing. This section contains online resources and tip sheets for people learning how to cope with a diagnosis, coping with stress, how to support caregivers, and accessing support and services.
Reacting to a diagnosis and dealing with feelings
- Shared Experiences booklet and audio from the Alzheimer Society of Canada. Suggestions from people living with dementia on how to cope with emotions, adjust to changes and plan for the future.
- Insight education bulletin written by and for people living with dementia from the Alzheimer Society of British Columbia. Ways to share your diagnosis, ways to live well and stay connected with others.
- Telling Friends and Family. From the Alzheimer Society of Canada offers a range of communication tips.
- Living with Dementia: Web tool developed in partnership with the University of Waterloo to provide information and resources that will help enable those newly diagnosed with dementia to live well and help prepare for the road ahead.
- Living and Transforming with Loss and Grief. By Us for Us© guides developed by persons living with a dementia in partnership with the University of Waterloo. Strategies for acknowledging grief and loss in self and others that can lead to acceptance, hope and strength.
- Loss and Grief in dementia. A resource developed for families and persons living with dementia, by the Alzheimer Society of Canada. This resource explains how ambiguity and mixed feelings impacts the lived experiences of persons living with dementia and their families.
- Living With Dementia – Personal Stories. From the University of Waterloo offer stories from persons with dementia about their journey, the realities of their lives, and how they continue to live meaningful lives.
- Care for the caregiver. Tip sheet created by the Dementia Society of Ottawa and Renfrew County. Helpful tips on dealing with the feelings of grief as you deal with dementia in your family.
- Preparing for support - Tips & Strategies: By Us for Us© guides developed by persons living with a dementia in partnership with the University of Waterloo. Offers practical ideas and suggestions for the person with dementia on living daily with your illness.
- Self -Care for the Caregiver. This resource, developed by the Alzheimer Society of Canada highlights warning signs for stress, checklist, and tips to cope positively as a caregiver.
- Taking a break: Why it’s Essential. Tip sheet created by The Dementia Society of Ottawa and Renfrew County offers thoughts and strategies on the importance of taking a break from care giving.
- Grief Related to Caregiving. Tip sheet created by The Dementia Society of Ottawa and Renfrew County. Helpful tips on dealing with the feelings of grief as you deal with dementia in your family.
- Take Care of yourself-Compassion Fatigue presentation-video
- Managing Triggers. By Us for Us© guides developed by persons living with a dementia in partnership with the University of Waterloo. Practical tips to manage stress triggers in positive ways. ENG only
- The Caregiving Role. This tip sheet from The Dementia Society of Ottawa and Renfrew County outlines the stages of care and possible role changes families may experience; along with tips for coping with changes.
- Care for the Caregiver This tip sheet from The Dementia Society of Ottawa and Renfrew County highlights the importance of taking care of your self will help you to be a healthier caregiver. Tips to take care of yourself and suggestions for support and community programs.
- Understanding your triggers
Getting help from family and health services
- Preparing For In-Home Help and Support. Tip sheet created by the Alzheimer Societies in Champlain on ways to make in-home help and support a positive experience.
- Ways to help. Practical tips to share with your friends and family and show that you care. Developed by the Alzheimer Society of Canada.
- I’ll get by with a little help from my friends. Online booklet created by the Alzheimer Society of Scotland. Tips for you, for your friends and family.
- Visiting with Elders. Handbook created by Baycrest Geriatric Care in Toronto. Meaningful suggestions on how to stay connected through visits.
Changing Relationships and Living Well with Dementia
- Enhancing Wellness. By Us For Us© guides created by persons living with a dementia in partnership with the University of Waterloo. Tips to live well, physically and emotionally.
- How to Engage a Person with Dementia . Tip sheet created by The Dementia Society of Ottawa and Renfrew County to help family members to consider meaningful ways to engage in life and leisure.
- Living and celebrating life through leisure. By Us For Us© guides created by persons living with a dementia in partnership with the University of Waterloo. Tips to live well, physically and emotionally.
- Living Well – ReThink Dementia. Series of videos with tips on living well with dementia.
- How relationships change-a resource from the Alzheimer Society of Canada. Considering how dementia can affect relationships between couples, family members and friends.
- Intimacy. Information provided by the Alzheimer Society of Canada, explores the topic of intimacy and how the need for companionship and closeness remains, though changes for families living with dementia.
- Holidays and Special Occasions. From the Alzheimer Society of Canada offers tips ands strategies to help ensure successful family events.