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Addressing Stigma Associated with Alzheimer’s Disease And Other Dementias

shame covered face
The Centers for Disease Control and Prevention (CDC) and the Alzheimer’s Association propose several actions to increase the quality of life for people with cognitive impairment. Two such action items are:

  • Increase public awareness about dementia, including Alzheimer’s disease, to reduce conflicting messages, decrease stigma, and promote early diagnosis.
  • Improve how to communicate effectively and sensitively with people suffering from dementia and their families.

Stigmas and misconceptions associated with Alzheimer’s disease are widespread and profoundly impact the care provided to — and the isolation felt by — people with Alzheimer’s disease and their families. People with dementia are often isolated, or hidden, because of stigma or the possibility of negative reactions from neighbors and relatives to behavioral and psychological symptoms. The idea that nothing can be done to help people with dementia often leads to hopelessness and frustration.

As with cancer and HIV, fear and stigma associated with dementias may cause individuals to delay seeking a diagnosis and care. Stigma associated with the diagnostic labels of dementia and mild cognitive impairment (MCI) can have a significant and negative impact on interpersonal relationships, interactions with the health care community, attitudes about service use, and participation in clinical research. The impact of stigma also extends to family caregivers of individuals bearing such labels.

Stigma may be even more profound for those who develop what is referred to as “younger-onset” Alzheimer’s disease (onset before the age of 65). Stigma may add to the burden of Alzheimer’s disease because it can prevent individuals and their families from:

  • talking with a health care provider when symptoms are present.
  • receiving an early diagnosis or any diagnosis.
  • benefitting from available treatments.
  • developing a support system.
  • living life to the fullest extent possible.
  • planning for future care, including plans for medical care, long-term care, and end-of-life care.
  • participating in research such as clinical trials.

 

Suggestions for addressing concerns include these steps:

  • Encourage individuals and their family members to talk with their health care provider about concerns related to increased memory loss or confusion.
  • Promote opportunities for individuals with Alzheimer’s disease to stay as engaged and productive as possible, emphasizing their abilities, not what they can no longer do.
  • Consider their own thoughts and feelings and how their own fears or biases may influence their provision of care and services to people with Alzheimer’s disease or their family members.
  • Take advantage of education sessions in public settings such as schools, libraries, community centers. Include individuals with Alzheimer’s disease and their caregivers in speaking to the public about the disease, their experiences, and the impact of stigma.
  • Include individuals with Alzheimer’s disease and their family members in the planning and development of state and community policies, practices, and programs that affect individuals with dementia.

 

Millions of Americans and their family members are affected by Alzheimer’s disease and related dementias and the impact will only grow as the US population ages.

South Mountain Memory Care focuses on high-quality, personalized care. South Mountain Memory Care is proud to offer a wide range of resident-focused daily activity programming to our residents. Each neighborhood offers activity space for group and one-on-one activities.

The brand-new building is a stand-alone memory care community, meaning that the entire building, staff, and programs, are designed to serve residents with cognitive issues. To ensure person-centered care and attention, we have accommodations for up to 28 residents. The building is divided into two neighborhoods (wings), each offering 10 private suites and 2 semi-private suites. South Mountain Memory Care is located in the Allentown suburb of Emmaus, Pennsylvania, and is easily accessible from the Lehigh Valley, New Jersey, and Philadelphia. For more information, go to southmountainmemorycare.com/.

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