Understanding Dementia

Overview

• The experience of living with dementia can be challenging.
• Understanding emotions and perspectives of individuals with dementia is crucial for providing support.

Personal Insights from Individuals with Dementia

• Fear and Anxiety

  • Individuals often wake up feeling afraid of what the day may bring.
  • Common thoughts include feelings of guilt and self-worth issues.

• Communication Challenges

  • Repeating oneself leads to reluctance in social interactions.
  • Individuals may feel disconnected from the world.

Barry's Experience

• Duration: Living with dementia for over 15 years.
• Despite challenges, Barry articulates his feelings and awareness.
• Cognitive Struggles: Difficulty remembering simple tasks (e.g., where kitchen items are).
• Maintains involvement in various activities, including running a care home and giving lectures.

Olive's Reflections

• Emotional Impact: Expresses feelings of guilt for affecting loved ones.
• Describes living with dementia as "awful" and "terrible".

Bob's Journey

• Full-time Care: Has been in care for two years.
• Cognitive Changes: Challenges with concentration and experiencing hallucinations.
  • Hallucinations feel extremely real; e.g., believing his room is on fire.
• Engaged in dangerous behavior, such as walking on the roof during episodes.

Judy's Challenges

• Diagnosis: Diagnosed with dementia 11 years ago.
• Experiences disorientation and visual perception issues.
• Emotional Insight: Feels sad about lost abilities but struggles to express her needs.
  • Her daughter, Karen, helps articulate Judy's feelings and desires.

Common Themes

• Feeling of Powerlessness: Many individuals feel helpless against dementia's progression.
• Identity Preservation: People with dementia still feel like themselves despite the condition.
  • Judy believes she is still the same person she was before the diagnosis.
  • Barry reinforces this by stating his identity remains intact.

Importance of Supportive Relationships

• Role of Family and Caregivers: Essential for maintaining well-being and identity.
• Emotional support (e.g., hugs from family) is vital for individuals with dementia.
• Empathy and Understanding: Important in responding to the needs of those with dementia.

Final Thoughts

• Message to Carers: "Hang on in there"; individuals with dementia need support and understanding.
• Recognition of the person underneath the illness can enhance the quality of life.