Study Reveals Underestimated Support Needs for Dementia Caregivers

Study Reveals Underestimated Support Needs for Dementia Caregivers

…By Larry John for TDPel Media.

Research Highlights Emotional Journey and Support Requirements for Dementia Caregivers


A study conducted by University College London (UCL), supported by Alzheimer’s Society and Marie Curie, has shed light on the levels of “pre-death grief” experienced by individuals caring for loved ones with dementia.

The research indicates that caregivers go through a range of emotions, including sorrow, anger, and acceptance, throughout the course of the disease, from diagnosis until death.

Interviews with 150 family caregivers of individuals with dementia living at home or in care homes were conducted as part of the study.

While the majority reported employing various strategies to cope with feelings of grief and identified helpful support services, the findings revealed that 30% of participants required professional support—exceeding the 10-12% recommended in the current public health framework for bereavement care.

Urgent Need for Enhanced Support Services

The study not only emphasized the vital role caregivers play in supporting individuals with dementia but also underscored their right to access appropriate support for their own well-being.

Concerns were raised regarding the existing services, which the researchers noted appeared inadequately resourced to meet the growing demand.


Call for Change and Preparedness

Alzheimer’s Society and Marie Curie jointly called for urgent improvements to the bereavement support system, aiming to ensure that services are well-prepared to meet the needs of dementia caregivers.

Rachel Warren, senior policy and research manager at Marie Curie and a researcher on the UK Commission on Bereavement, emphasized the importance of addressing the loneliness and distress experienced by caregivers of individuals with dementia.

She highlighted that caregivers may mourn their loved ones while they are still alive, experiencing grief for the loss of shared futures and relationships.

Insufficient support increases the risk of caregivers developing prolonged grief disorder, negatively impacting their well-being.

Insufficient Resources and the Right to Support

Lead researcher Kirsten Moore from UCL highlighted that current bereavement models may underestimate the level of formal counseling and support needed by dementia caregivers.

The study revealed a significant gap between the demand for support and the availability of appropriate resources, leaving many caregivers without the essential support they require.

Moore stressed that dementia caregivers provide crucial care and deserve access to suitable support for their own well-being.


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