The Unseen Gaps

Dementia care is underrepresented; everyone knows the struggles of the disease. But how often is the struggle of the caregivers shared?

This blog focuses on the sights provided by Tishon Walsh-Pinnock. Pinnock is an RPN and the Director of Member Relations & Lead Nurse at Memory & Company.

Pinnock shared her insight and the unknown difficulties faced by caregivers. One of the main highlights from our conversation, "Many families wait until there's a crisis-like wandering or aggression before seeking help," stated Pinnock. It shows the need for education about the early symptoms of dementia and the progression of the disorder.

People tend to believe dementia is primarily associated with loss of memory, but they don't realize the impact on their daily lives. A senior with dementia is likely to require assistance with their daily routine, emotional support and constant reassurance. "One of the biggest challenges in dementia care is helping members with basic ADLs," mentioned Pinnock.

The assistance with their basic activities of daily life can take a physical and mental toll on caregivers. However, the lack of cooperation from the seniors increases the difficulty of their role. "Those with advanced dementia usually accept assistance because they're not fully aware of their limitations. The real difficulty is with individuals with mild to moderate dementia, who still feel they should be independent. They may resist help or deny their need, like refusing toileting or hygiene support because their perception doesn't match reality,"said Pinnock.

Cultural differences can impact the care provided to seniors as well. Pinnock expressed "Minority groups will suffer in silence (more) because they are reluctant to seek support for themselves and loved ones living with dementia. This is often cultural, that it’s expected to keep and take care of sick or senior family members (don’t place them in a home). Thus, caregivers will be required to overcome this barrier and reassure the seniors that asking for help is necessary. Unfortunately, there will be a significant number of seniors who will continue to resist this support due to their upbringing and prioritization of cultural norms.

This resistance is common, which emphasizes the importance of patience amongst caregivers. Caregivers must receive the appropriate education and training to provide the best care possible to seniors. However, Pinnock shared, "Many facilities struggle with dementia care when they don't have proper tools or training. Senior caregiving is a field that requires more attention and support. The healthcare system struggles with staffing shortages, limiting its ability to provide caregivers with appropriate training to assist seniors.

"In their health-care system, seniors are often overlooked or misdiagnosed with issues dismissed as 'just a UTI'. Their medical needs can be ignored because the focus is placed solely on their dementia, even though they have other serious health concerns," stated Pinnock. Canadian seniors face several difficulties when they are trying to receive support from the healthcare system. Their access to primary care facilitators has declined from 41% to 25% since 2017.

The shortages and lack of resources result in inadequate care provided to seniors, with cases of misdiagnoses or poor treatment plans. There was a case in BC where an elderly woman went into the ER with third-degree burns but received surface-level wound treatment.

Thus, senior-caregiving facilities require more support from the government and their community. Their support allows these facilities to provide the best care and ensure seniors are able to enjoy their daily lives. Pinnock shared, "The retirement home I managed, we specialized in dementia care with 23 beds, a single-level layout. Keeping everything on one floor helped reduce triggers, since people with dementia may look for stairs or elevators when they feel the need to go somewhere."

The facility worked to provide seniors with a comfortable environment while taking the appropriate measures for their safety. They incorporated a variety of elements, allowing seniors to enjoy a positive environment. "We used bright, contrasting colours, like blue walls and blue plates, to support perception and make items easier to recognize. A 5:1 staff to member ratio allowed us to manage behaviours effectively and provide consistent support," said Pinnock.

The design and layout of the facility indicated a high level of attention to detail and foresight into decreasing the struggles of caregivers. However, Pinnock shared that this level of design and attention to detail was not common."Although our home was designed specifically for dementia care, many facilities in Canada aren't equipped the same way. More government funding and resources are needed to better support families, homes, and individuals living with dementia," said Pinnock.

Fortunately, there are caregiving facilities that continue to work towards providing a healthy environment despite the lack of funds. They will create consistent routines and encourage seniors to interact with others. Pinnock mentions the importance of routine for seniors "They may not remember why something is done, but the familiarity helps them feel secure. Even a small change can be very disruptive, because they have a harder time coping and adjusting compared to someone without memory loss.

As we have mentioned throughout this blog, caregivers require support from our community to provide the best possible care. Hence, let's ensure to create an environment where they can ask for that support easily.

And remember "Dementia is a process not only for the person living with the disease, but also for their loved ones." - Tishon Walsh Pinnock.

AI Tools and Prompts

Opening Image Prompt

Created usingGPT Image 1, Nano Banana, Seedream 4.0, and FLUX.1. 

Prompt: “Generate an image of a caregiver supporting a senior with dementia”

Healthcare Image Prompt

Created usingGPT Image 1, Nano Banana, Seedream 4.0, and FLUX.1. 

Prompt: “Generate an image of a senior waiting in a doctors office"