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Feeling Forgotten: Dementia Caregivers Express Loneliness and Abandonment

Struggles intensify for families as a relative develops dementia, according to caregiver Caroline Chong, who emphasizes the growing burden over time.

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Struggles intensify for families as dementia diagnoses take their toll, according to caregiver...
Struggles intensify for families as dementia diagnoses take their toll, according to caregiver Caroline Chong.

Feeling Forgotten: Dementia Caregivers Express Loneliness and Abandonment

Revised Article:

Hey there!

Back in the '90s, when my grandpa got hit with vascular dementia, suddenly we were in for the long haul, caregivers by default. In those days, there was no hotline to call, no daycare centers to send him to, and no respite help for the times we ourselves needed a break.

Fast-forward to today, and such resources do exist, yet families still feel the harsh loneliness of this journey, trying to make ends meet with minimal support.

Take Mr. Lim for instance. Upon his father's dementia diagnosis, he benefited from the Post-Diagnostic Support (PDS) program. He had access to a dedicated caseworker, regular visits from a multi-disciplinary crew, and tailor-made care plans. This S$2.6 million initiative by the Lien Foundation and Dementia Singapore aimed to support newly diagnosed families — a commendable step, don't you think?

But here's the catch: the support lasts only for a maximum of 12 months, while dementia is a disease characterized by mid- to long-term decline.

"My caseworker said I'd have to re-apply with the hospital, but we're no longer a priority. I felt deserted," Mr. Lim shared with me. Sadly, his father's dementia worsened after support ended.

You've got a tough choice on your hands, families: re-navigate hospital referrals, wait with uncertainty, and pray for support or bear the caregiving burden on your own.

DEMENTIA CAREGIVING: ONLY GETS TOUGHER

Dementia isn't static; mild cases morph into moderate or severe, demanding an intensification of caregiving as time passes. The challenges that come with the diagnosis and the cold hard reality of long-term care only multiply.

DID YOU KNOW? Overall support options for families with vascular dementia patients in Singapore are evolving but face hurdles. Here's a glance at existing and proposed systems to aid them:

Current Support Systems

  1. Community Organizations and Support Groups: These organizations are valuable resources, offering workshops on dementia, but often lack capacity for continuous follow-up.
  2. Daycare Centers: Available for temporary relief from caregiving, they offer short-term respite services.
  3. Help Lines: Although useful, these services usually operate on limited hours, preventing 24/7 support.

Proposed Improvements

  1. Lifelong Care Teams: A proposed concept involves permanent support teams of nurses and social workers to track disease progression and adjust support accordingly.
  2. Integrated Healthcare Ecosystem: The push toward an integrated healthcare system emphasizes primary care integration, care mediation, long-term care, and community-based services, aiming to provide ongoing support.

Challenges

  1. Capacity Constraints: Many support services are limited by capacity and cost, which can make access challenging for families.
  2. Fragmented Coordination: The current system can be disjointed, requiring systemic changes to offer consistent support.

Advice for Families

  • Advocate for Ongoing Support: Push for more comprehensive, continuous support services.
  • Tap into Community Resources: Use community resources and support groups to their fullest extent.
  • Encourage System Reforms: Influence policymakers to integrate dementia care into a broader healthcare system.Stay strong, caregivers!
  1. The lack of lifelong care teams and an integrated healthcare ecosystem poses significant challenges in providing ongoing support for families dealing with vascular dementia, which is a disease characterized by mid- to long-term decline.
  2. The science of dementia care requires a holistic approach that emphasizes nutrition, mental health, and health-and-wellness, not just medical treatment. Regular commentary on the importance of these aspects can contribute to improving the quality of life for both patients and caregivers.
  3. As dementia progresses from mild to moderate or severe stages, it necessitates an intensification of caregiving, making it crucial for families to advocate for ongoing support, tap into community resources, and encourage systemic reforms to ensure comprehensive care, not just in the initial stages but throughout the entire health journey.

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