Dementia is an umbrella term used to describe a set of symptoms affecting brain function has a significant impact on health care systems and individual lives. It is not a normal part of aging but it is a complex condition that, has more women than men receiving a diagnosis (almost 20% compared to 15%) and close to 18% of those who are 80 and older being affected.
By 2031 the total combined health care system costs and out of pocket personal expense of caring for a people living with dementia is predicted to be north of 20.8 billion dollars.
To help provide context, The Canadian Institute for Health information recently released. “ A Step Toward Understanding Health Care Trajectories of People Living with Dementia’.
This new report builds on both Canada’s national dementia strategy and previous work done in 2018. The authors use multiple data holdings to “examine the clinical characteristic, caregiver factors and socio-demographic information”. Particular focus was placed on home care and long-term care data collected from a group of people over a five-year period post diagnosis. The goal was to understand their interactions with a broad range of services provided by health care systems in various provinces provided for those with Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed dementia.
Researchers found that there were 4 main care trajectories that 92% of people followed:
1) Live at home with home care (31%)
2) Move to long term care after homecare (27%)
3) Move to long term care without previous publicly funded homecare (8%)
4) Live at a private home without homecare, not supported by the system. (28%)
Results showed that family doctors are often the first point of contact. However, many practitioners preferred to refer patients to specialist, (usually a geriatrician), which often resulted in wait times and delays in diagnosis. Underdiagnosis were identified as common as well as stigma, uncertainty of symptoms, denial, language barriers, fear of discrimination.
Trusted family doctors also play key roles in helping to educate families, patients and care providers, in coordinating care, referring people to community services, care planning and prescription and managing medications. However, according to the report, “family doctors may face numerous difficulties related to managing dementia care. These include not having enough time to assess the patient during consultation and a lack of specialized training”. One referenced study showed researchers that only 35% of Canadian family doctors felt well enough prepared to accurately detect and care for dementia patients.
Lack of acceptance becomes a barrier
Doctors also claim that the biggest challenge for all concerned is acceptance of the diagnosis by the person living with dementia—especially their family. Timely acceptance in the early stages and getting involved in outreach programs tend to help both patients and caregivers have less trouble with navigating the system, understanding their caregiving roles and reducing burnout, according to the report.
Overall the researchers conclude that not only is the population living with dementia going to grown but also our understanding of the needs. They caution that this will require the healthcare system and families to recognize the fact that the patient and caregiver groups affected are not homogeneous and will involve a variety of different journeys and experiences based on unique needs and circumstances.
Care at home vs LTC
Only 43% of people living with dementia received homecare assessments within 6 months of their diagnosis by a primary care provider. Only 58% had publicly funded homecare as part of their trajectory and almost half of this group subsequently moved to a long-term care facility. In higher income areas, people were less likely to receive public support, move into long term care or require hospitalization as frequently.
Caregivers of all people living with dementia are much more likely to experience depression, distress and anger than those who are providing care and support for individuals with different needs. Along with deteriorating health and
socio-economic factors these caregiving pressures were shown to be included in a combination of factors leading to long-term care admission. Just 1 in 10 people living with dementia were moved into LTC without having received any publicly funded home care—their admission rates were, however, 11 months earlier than those who had received outside home care services. Of those who did move to LTC, 60% had been hospitalized in the past 3 months. This rate was reduced to 12% once they moved to a care facility.
Shared stories:
Wendy Wu became the primary caregiver of her late in-laws, who both had dementia and multiple comorbidities, following her retirement. The family provided most of the care themselves with limited home care services, and her father-in-law ultimately moved into an assisted-living setting when his care needs became more complex. Wendy describes becoming a caregiver for someone living with dementia as “being dumped into the sea and learning how to swim.” Wendy is of East Asian descent and lives in a metropolitan area in Ontario.
Susan Palijan is a part-time university student, full-time employee and primary caregiver for her father, who has both dementia and a long history of mental health and substance use disorders. While Susan is the primary caregiver, her sister has been a strong support to her in his care. Susan’s father has been hospitalized more than 8 times in 18 months. Despite his increasingly complex care needs, he has refused home care services or to move to a long-term care facility. Susan has therefore managed his care largely on her own, while also facing stigma and a lack of coordination between services aimed at treating his dementia and other illnesses. Susan lives in an urban area in Ontario.
Sharla Cadwell is a registered nurse, wound care clinician and case manager. For the past 10 years, she has coordinated home care services for 2 rural communities while also running a lower-leg circulation clinic through Alberta Health Services. She works directly with home care clients—including those living with dementia, as well as their families and caregivers—to assess their needs, connect them with needed home care services and provide direct clinical care. As a care provider in a rural setting, Sharla says she frequently has to “be creative” to connect clients with specialized care services often located several hours’ drive from their homes. Sharla lives in a rural area in northern Alberta.
David Hood is a recently retired family physician. During his 4-decade career in family medicine, David treated many people living with dementia across their care trajectories. He was also a caregiver to his late parents and father-in-law, who all had dementia. David supported his parents as they moved into a retirement facility, and his mother as she ultimately moved into a locked ward offering specialized care for dementia. His caregiving experiences combined with his professional experience as a physician give David a unique perspective on both the strengths and weaknesses of health care systems in supporting people living with dementia and their caregivers. David lives in an urban area in Ontario.
