Global health systems are experiencing an unprecedented demand for health services due to a major demographic shift towards aging populations and the increasing prevalence of cognitive dementias, such as Alzheimer’s disease (AD). The treatment options available for AD remain very limited, with likely few opportunities for prevention or cure of dementia to be available in the near future. As the number of individuals diagnosed with AD increases, there is a growing shortage of beds in long-term care facilities, and very few alternatives to caring for these patients in the community.
This study examined the experiences of formal caregivers (community nursing) and families caring for loved ones with AD who need help in providing their loved ones with the necessary support to maintain quality of life. Allowing a person with AD to remain at home is often viewed as a more desirable course of action to institutionalization, however the availability of community resources to support families to care for loved ones at home is often very limited. Dr. Snowdon partnered with a leading international pharmaceutical company to explore the scope, impact, adequacy and cost of home care services for patients with AD and their families in the province of Ontario. This study examined the rate and type of service utilization in the community, the frequency and type of home care services, the experiences of both formal and informal caregivers in providing support and care to patients, and the gaps in services experienced by these families.
The findings revealed that families receive, on average, three hours of formal home care services per week. The availability of programs to engage, support and socialize people living with AD are very limited, which results in isolation from community engagement for people with AD, and very high levels of burden for families who must provide care and supervision 24 hours per day, 7 days a week. Families described the devastating impact of this caregiving burden on their quality of life, their financial burden in paying for privatized services to offer respite from caregiving, and the negative impact on their employment opportunities. At the health system level, the economic burden for the provincial health system is growing, and supporting the AD population in the community may exceed the entire home care budget within the next decade. Novel therapies for AD that prolong the ability of individuals with AD to live independently with greater quality of life are urgently needed to offset the substantial burden of caregiving for families and the growing costs of home care services for health systems.