The advanced stage of Alzheimer's disease usually requires intensive care. As a caregiver, your role is focused on preserving quality of life and dignity. It is estimated that there are currently 30 million people with dementia worldwide1, and this number is likely to double every 20 years.2 People with dementia generally require high levels of care, most of which is provided by informal caregivers or family members. Without caregivers, people with dementia would have a worse quality of life and would need institutional care more quickly, and national economies would be swept away by the rising demographic wave.
However, this support leads to caregiver suffering and a worse quality of life. Many studies have shown that caregivers of people with dementia (in particular care providers) bear a higher burden than other caregivers. In a meta-analysis carried out by Brodaty et al102, it was reported that the best indicator of the success of an intervention was to include the patient, in addition to the caregiver, in a structured program, for example, teaching the caregiver to manage behavioral problems. Caregivers face many obstacles balancing the provision of care with other demands, such as parenting, professional career and relationships.
The variables most associated with a higher risk of institutionalization are demographic (caregiver relationship with care recipient, employment, financial resources and age) and psychosocial (caregiver burden, caregiver reaction to caregiver behavior problems, “desire to institutionalize”, relationship quality and caregiver health). There are certain groups of caregivers who may experience additional challenges in addition to those that are directly related to providing care. Nearly 60% of American family caregivers of people with dementia are also employed, of whom two-thirds reported being absent from work, 8% refusing opportunities for promotion, and up to 31% who had stopped working to meet their care responsibilities. A randomized controlled trial evaluated a home intervention in Goa (India) that consisted of basic education about dementia and common behavioral problems, strategies to control behavioral problems, support for caregivers in activities of daily living, referral to psychiatrists or other medical professionals for help with BPD, creation of networks to help caregivers form support groups and advice on government provisions for older people. As a caregiver or family member of someone with Alzheimer's disease or related dementia, you can take steps to make home a safer place.
While placement in a nursing home helps reduce caregivers' direct care obligations, it doesn't necessarily reduce caregivers' distress. Look for a support line, a caregiver support coordinator, specific programs for veteran caregivers, and other resources, such as personal care activities, tips and tools. Recently, researchers began to examine the effectiveness of technology-based interventions for caregivers who use computers, phones, email, and the Internet to provide support and information to informal caregivers.