What Can We Learn from the Caregivers of Adults with Dementia? A Qualitative Study

Introduction: In the US today, there are approximately 6.5 million people age 65 or older living with Alzheimer’s Disease or other dementias. This number is expected to increase to 12.7 million by 2050. Dementia imposes debility and frailty upon those effected, which is progressive and often follows an unpredictable trajectory. This places significant burdens on their informal caregivers, negatively impacting financial security, emotional and physical health, and overall quality of life. Informal caregivers are a heterogeneous group of partners, spouses, adult children, family members and others. Purpose: This qualitative study explores the experiences, worries and concerns of informal caregivers of older adults with dementia, in order to describe improved policy and service delivery models that could provide efficient and sustainable solutions to their challenges. Methods: Semi-structured interviews were conducted with seven informal caregivers. Transcripts of these interviews were analyzed using the Grounded Theory analytic process referred to as the Constant Comparison Method, consisting of coding, memoing and theorizing. Results: Nine sub-categories and three categories were identified from analysis and data comparison The three categories were “Difficult day-to-day experiences and activities,” “ Inner thoughts and suffering” and “Hoping to make a difference. The final theme emerged as “Informal caregiving for older adults with dementia is a condition.” Some literature has referred to this as “caregiver stress” or the Caregiver Syndrome. Conclusion: Informal caregivers of older adults with dementia experience significant physical, and emotional stresses that result in concerns about their overall wellness. This in-turn impacts their ability to function as sustainable caregivers for their family members at home. Lack of reliable in-home personal care supports, patient companionship and respite result in excess worry, stress and loss of quality of life for the caregiver. Over a trajectory of years, inherent in the dementia diagnosis, informal caregivers are likely to encounter negative physical and mental health outcomes. Without changes in both policy and reimbursement through home health, hospice, palliative care and community-based resources, this condition of caregiver stress or “syndrome” will contribute to the ongoing challenges of caring for an ever-increasing number of vulnerable elderly individuals