AgeRight Blog


In their Own Words: People with Dementia Tell us What’s Important to Them

[UPDATE: This study impacted us greatly at Senior Living Residences. It was a catalyst to take a local leadership role to teach people how to better communicate with someone living with dementia. The result? Our Dementia Friendly Communities Initiative launched in 2014. Learn more about this groundbreaking initiative that shaped the conversation about dementia across Massachusetts and New Hampshire.]

Study ranks “quality of life” indicators

As Alzheimer’s Awareness month begins, let’s turn our focus to the people who are living with the disease. What are their own thoughts, feelings, needs and desires?

Despite Alzheimer’s disease being a progressive illness that severely affects cognitive functions, individuals with the disease are able to tell us what quality of life means in their own lives.

A recent study surveyed individuals with the disease themselves, rather than their family caregivers. The research, by the United Kingdoms’ Alzheimer’s Society, was highlighted at the Alzheimer’s Disease International conference earlier this year.

The researchers wanted to know: what key factors influence quality of life for a person with dementia? Individuals with Alzheimer’s ranked them in order of importance:

  • Relationships and having someone to talk to
  • Surroundings/environment
  • Physical health
  • Sense of humor
  • Independence
  • Ability to communicate
  • Sense of personal identity
  • Ability to engage in activities
  • Ability to practice faith or religion
  • Going through the experience without stigma (being treated fairly)

Meaningful conversation ranks #1

The most important quality of life indicator was having a relationship, defined as having someone to talk with.

However, previous studies have shown that individuals with dementia report dramatic changes in the attitudes of those around them following diagnosis. Once a diagnosis is shared, individuals report being treated differently: longtime friends and family members may speak with them less frequently or less directly. Additionally, medical professionals most often speak with family members only, often ignoring the individual with the disease.

During this month we highlight Alzheimer’s disease and the difficulties facing those who live with it daily. What can we do as individuals about this enormous world-wide problem? We can find time to connect with and really talk to someone we know who has the disease.

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