Expert Advice from Marie Fay, OTR, DRS, Dementia Care Specialist and Founder of NorthStar Dementia
The term Dementia describes a group of symptoms that impact memory and other thinking skills. The symptoms of dementia are caused by a number of underlying disease processes, of which Alzheimer’s disease is the most common (~70% of cases).
Dementia is a progressive condition, which eventually limits a person’s ability to independently participate in daily activities.
Primary symptoms include:
- Memory loss
- Challenges with speech and communication
- Reduced attention and concentration
- Visual perceptual difficulties (the way our brains perceive and interact with the world around us)
- Poor judgement and reasoning
- Changes to behaviour and personality
NorthStar Dementia Ltd. was launched in 2022 in response to a community need for Comprehensive Dementia Assessment, caregiver education and support services. As the numbers of those living with dementia in Bermuda continue to rise placing greater demands on an already strained health care system, NorthStar’s evidence based and client-centered consultation services can improve the safety, independence and quality of life of persons with dementia and their caregivers. Our goal is to assist clients to successfully age in place at home with the support of their family caregivers to reduce the overall cost and burden of care for this vulnerable population.
We know that receiving a diagnosis of dementia can be daunting. Whether you are noticing changes yourself, or are supporting someone who is, you likely have many questions. It can be overwhelming trying to figure out where to turn to for answers and help. NorthStar offers a guiding light to Bermudians navigating dementia, providing direction and support to ensure they find their True North. We want you to know you are not alone in this journey
- It is estimated that there are 3000 Bermudians currently living with a diagnosis of Dementia
- Seniors aged 65+ will account for 24.9% of Bermuda’s population by 2026
- 1 in 10 Seniors will be diagnosed with Dementia
- 80% of dementia care is undertaken by family members who report high levels of caregiver stress and burnout
- 75% of clients living with Dementia are uninsured or under insured, and unable to afford the out of pocket expense for essential dementia care and support services
Majority of NorthStar’s referrals are currently received from concerned family or community members. I often hear that the person they are trying to support is “not aware” of what is happening to them, “in denial” or “resistant” to receiving the necessary care and attention to keep them safe. Sometimes this can feel as if it is a direct and intentional act of defiance of manipulation. It is not uncommon for persons living with dementia to be reluctant to visit with their doctor, openly discuss changes to their memory, or participate in formal testing. There is many reasons for this. It may be because they are fearful of what is happening to them and are aware to some degree that something just “isn’t right”, they may not have the processing or reasoning skills to understand that they are experiencing brain changes, or they may even have a clinical lack of awareness or insight into current challenges (anosognosia) as a result of their condition.
Despite these common challenges, early and accurate diagnosis opens the door to optimal care and treatment options. It helps people to plan ahead while they are still able to make important decisions regarding their care and support needs and on financial and legal matters. It also helps them and their supporting family members to receive practical information, advice and guidance as they face new challenges as the disease progresses.
Practical strategies to get your loved one the help they need:
- Come from a place of care and concern – reassure the person that you love and care for them, and want them to stay as healthy and happy as possible for as long as possible. Sometimes it helps to place greater emphasis on yourself and your needs, for example, “I have concerns mom. I am worried about you. Checking things out with the doctor would make me feel so much better”
- Repeat information as necessary – a common part of the condition is short term memory loss, which can become so significant that information can be forgotten in a matter of minutes. Expect to have to repeat information regularly over time.
- Call the doctor’s office – phone ahead to make your observations and concerns known. While client confidentiality may prevent health providers from sharing information with you (without prior client consent), this may enable them to undertake a more thorough examination in office at their next scheduled visit.
- Write things down to reinforce information – accommodate speech and language challenges by providing important information in a variety of ways (verbal, written, visual etc)
- Ask your loved one for permission to accompany them to any medical appointments. Two sets of eyes and ears are better than one! Record any findings and recommendations in writing to help with processing of new information.
- Focus on the benefits of early diagnosis – early and accurate diagnosis leads to better outcomes and quality of life over time.
- Be patient – everyone processes information in their own time. We cannot force someone to receive care and support services if they are not ready to. Every phase in dementia is temporary. Even this one.
Most importantly, prioritise your own self-care needs. Caring for someone with dementia is a marathon not a sprint. If you are not feeling your best, this will take a toll on the quality of care you are able to provide others. Be sure to take care of your own physical and mental health needs first, and solicit professional support services where needed to avoid crisis situations and to ease the burden of care over time.