THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Challenges with Home Care*

Issues Recommendations

Operations and Management

  • lack of transparency in terms of scope of services
  • inconsistent program availability and eligibility reported throughout the province
  • confusion regarding public delivery and contracted private agencies
  • if client turns away case coordinator upon assessment, file is closed
  • province wide access and coverage- rehabilitation, palliative, respite, self-managed care grant, etc.
  • develop and implement standards of care
  • develop and implement mandatory dementia training program for administration to front line care workers
  • expand reach to care of family
  • establish service agreements outlining roles and responsibilities of all parties involved in care/service plan
  • assessments and interviews need to take place with family member or care partners awareness

Front Line Service Provision

  • lack of consistency in the quality of care- poorly trained workers, and revolving care workers leaving clients having to explain over and over what the needs are
  • language barriers with ESL workers
  • assign one case coordinator who has access to knowledge about existing community supports and programs
  • retain consistent workers
  • explore ways to enhance communication
  • expand skill set to include leisure and lifestyle

Family Support Team

  • loss of wages and no compensation for care-giving duties
  • unable to access funding through Self-Management Grant for own duties
  • inexperience and limited knowledge about dementia
  • must have ability to be a strong advocate for the person living with dementia
  • burn-out and impending health problems
  • explore means of compensating family members who have become a part of the care team
  • restructure program guidelines SMG to be consistent and available to any or all members of the care team
  • in home or special setting for emergent respite care
  • education and support for family support team in order to assist with confidence (access to informal learning series specific to early onset dementia)
  • care for the caregiver as part of care plan

*many of the same challenges discussed under Home Care also apply to Community Care and Long Term Care

Community Care (soft supports)

  • there is no direct support for person living with dementia to get to appointments and programs, or to maintain their home or lifestyle
  • community programs may not be flexible enough to accommodate people living with dementia
  • assessment tools not appropriate to social and emotional needs of person living with dementia
  • day programs are offered as respite for caregiver, not always as stimulation for person living with dementia

Long Term Care

  • currently not suitable for people living with early onset dementia. Many people in this population group are not presenting as “end stage” and have very different care needs than older or more frail people who have palliative care needs
  • challenging to obtain diagnosis and at present that is required for placement
  • assessment tools for placement and care plan do not fit the person or situation
  • private care facilities are a huge cost driver


Call for Action

To provide the best quality of life for people living with early onset dementia, implement the social model of care versus the medical model of care. Move away from long term care, and toward housing and programming that is more representative of the family home. This level of support needs to utilize more recreation therapists and activity aides than currently found in long term care. Under this new model, programs need to be affordable and subsidized.

More publicly funded care environments over private care is the sentiment of this group. Consistent dementia training, that adequately covers special needs of people living with early onset dementia, needs to be mandatory for administration through to front line workers, volunteers and family members.

Next Steps

  • EODA media kits with talking points need to be revisited and distributed
  • people all across the province can take the kit with them and talk with their government officials and media
  • continue the discussion with stakeholders – people living with the disease, Health Minister, other related ministries such as Human Services, family caregivers, community support providers such as Family and Community Support Services (FCSS), other advocacy groups sharing the same concerns with the intention of presenting as one voice for change
  • research and data on people living with early onset dementia, caregivers, programs, facilities, etc. needs to be compiled and analyzed

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