The Cost of Care in Advanced Dementia : Blessing or Burden?

In Singapore, the cost of dementia care is estimated to be as great as for heart disease and cancer. Singapore will spend $1.4 billion annually for healthcare "direct (or "formal") costs", which encompasses both medical and non-medical expenses.

"Indirect (or "informal") costs relate to the financial burdens affecting the individual, which includes loss of income for family caregivers who care for them without any financial returns. In Singapore, non-reimbursable and unpaid labor costs range annually from $15,750 for mild dementia to $33,408 for moderate dementia. With increased debility and complications in the last stage of dementia, these costs will increase.

Beyond the financial burdens, the intangible costs of caregiving for the advanced dementia (AD) sufferer are the psychosocial, emotional and spiritual burdens which are difficult to quantify. Caregivers suffer loss in quality of life and are more likely to suffer poor physical health and emotional distress than non-caregivers. Caregiver burden leading to burnout is a known factor for institutionalization.

The main aim of this study is to measure the intangible costs of caregiving for AD patients and compare these costs between those living in the community (home based) and in institutions (ie nursing home or hospice). 180 principal family caregivers of advanced dementia patients will be identified and recruited from different healthcare sites (community and institutions) to participate in a longitudinal survey to identify their needs and mental health outcomes. Lived experiences of 30 AD family caregivers of community living (with and without palliative care support) and institution-based (ie nursing home) advanced dementia patients will be examined via a longitudinal qualitative approach with a concurrent nested design.