Today the Alzheimer's Association promotes the importance of early detection of Alzheimer's disease. Some of the benefits include: maximizing benefits from available treatments that may relieve symptoms and maintain independence longer; allowing time for future planning with the ability to take part in the decisions; and providing early education for the person, the family, and loved ones about the disease process. (Acquired 12/29/10 http://www.alz.org/alzheimers_disease_why_get_checked.asp)
However, there is evidence in the literature that diagnosis of dementia is often missed or delayed in primary care. Some major contributing factors cited included: time and financial constraints, diagnostic uncertainty, stigma and PCPs experiencing difficulties in disclosing the diagnosis. The stigma results from a number of fears such as: being labeled with a mental illness, losing independence, and needing to move into a nursing facility. One study indicated that PCPs conveyed fear that disclosure could damage the doctor-patient relationship. (1)
All these factors seem to suggest that dementia is poorly understood and conjures up only pictures of persons who are lost, without purpose or joy, and exist only as a burden to others. If this message could be reversed, and persons with dementia could be recognized for their abilities and potential at every stage of dementia, then perhaps dementia would be diagnosed more readily and quality of life would be promoted throughout the disease process.
This process requires education—education for all health care providers, family and loved ones, and all persons who are serving these individuals in the home or in facilities. To realize this different perspective, a foundation in theoretical bases is recommended.
The Allen Cognitive Abilities Model categorizes functional performance into levels and these levels can be compared to stages of dementia. The Model is unique in that the different Allen Cognitive Levels describe abilities that remain at every stage of dementia. With this knowledge the team of care partners, family, and loved ones can promote the person's engagement in meaningful activity and continue to foster relationships with others.
The Theory of Retrogenesis, authored by Dr. Barry Reisberg, compares the functional abilities of persons of different developmental ages to the functional abilities of persons in different stages of dementia. This theory is not suggesting that a person be treated as a child; however, it allows the care partner or loved one to determine the person with dementia's level of independence and/or expectation of performance abilities in an activity based on the comparison to the abilities at a specific developmental age. This theory facilitates understanding of the amount or type of assistance the person may need in order to engage in any meaningful activity and ultimately promotes engagement in life and relationships.
The Person-Centered Care Approach created by Thomas Kitwood, PhD, focuses on the person, the individual who has the diagnosis of dementia. It emphasizes the importance of embracing all the person is, his/her accomplishments, relationships, interests, lifestyle, values, beliefs, culture. This theory assists the care partner and/or loved one to understand this person's uniqueness.
Applying these theories to our understanding of and care for the person with dementia can lead to realizing that all persons with dementia have abilities and uniqueness and the potential for joy.
The Pioneer Network, a national organization that's mission is "a cultural change of aging that is life-affirming, satisfying, humane and meaningful" is a large proponent of person-centered care and cultural change within long-term care facilities. This cultural change is what is needed in order to remove the stigma and embrace persons with dementia in our lives and in our communities. Education and the "pioneer" spirit can change a culture. (Acquired 12/29/10 http://www.pioneernetwork.net/AboutUs/Values/)
Alzheimer's disease and related dementias, ADRD, does not mean the person is destined to a life without joy or purpose or relationships. When a person is realized for all his/her abilities and uniqueness, true quality of life can occur.
- Koch, Tamar, Illfe, Steve, Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review, BMC Family Practice, 2010, 11: 52.