The importance of knowing the early life history of people with memory loss

Written by Dr. Eilon Caspi

Approximately 40% of the general population will reside in a long-term care facility at some point in their lives. What would you want your caregivers to know about your life if your health, functional, and/or cognitive status required you to reside in this care setting?

Behind older people with memory loss, like behind every person, stands a rich life history. People with memory loss have the human right to be with people who know their past. Developing a close and trusting relationship with people with memory loss is the foundation for providing person-centered care. Knowing, understanding, and using a person's life history is key to building and maintaining relationships based on trust. 

1. The only way to truly and holistically understand a person in the later stages of their life is through a lifelong perspective, including knowledge of significant life events from early childhood and young adulthood.
2. Long-term memory is relatively preserved until the advanced stages of dementia. In order to preserve a person's identity, one must focus on positive memories and experiences from the early stages of life. Effective treatment of people with memory loss is based on focusing on the person's relatively preserved abilities rather than on abilities that have been lost and no longer exist (short-term memory).
3. Functional, motor, and behavioral losses in people with memory loss occur more or less in the reverse order of their original development. Functional abilities, skills, and activities that a person acquired and learned in the early stages of life are relatively preserved in the advanced stages of dementia, such as the ability to feel a warm and loving relationship, enjoy touch that provides a sense of security (hugs, caresses), enjoy favorite music (sing, move, dance, and drum to a basic rhythm), feel pleasure from petting a beloved pet, enjoy a favorite food or drink, enjoy nature and soothing scents such as a breeze.
4. Knowing the person's life history in as much detail as possible allows caregivers to communicate with the person in an effective and emotionally beneficial way and to avoid topics and/or life events that cause the person emotional pain. This knowledge also allows caregivers to empathize with the person when they recall negative events from their past (by validating these feelings). This knowledge also allows caregivers to attribute meaning to the person's speech patterns that appear incoherent or illogical (such as a resident asking the care team to bring him his "torpedo" - the nickname he used for his hearing aid for years).
5. Knowing a person's life history makes it possible to plan, encourage, and involve the person in enriching, appropriate, and meaningful activities based on the person's interests, hobbies, preferences, and present abilities.
6. Knowing a person's past allows for understanding the meaning and human need behind their reactive behavior. Research and the experience of professionals in the field show that there is often a connection between negative events from a person's distant past with memory loss (such as life-threatening experiences and traumas) and the content of reactive behaviors and/or emotional distress in the present. For example, during a group activity in which residents were planting tulips, one of the elderly residents suddenly turned pale, began to tremble, breathe heavily, and hit another resident. It turned out that as a young soldier in World War II, several of his platoon members were killed by the enemy after they stumbled upon an open field of tulips, and the physiological and emotional distress he experienced was caused by seeing the tulips (Gunston, 2000).
7. Knowing the past of a person with memory loss allows for the development of a personalized treatment plan that respects the person's values. The treatment plan must take into account their beliefs, habits, ways of coping with challenges throughout their lives, their achievements, failures, expectations, interests, unique skills, and preferences. Knowing the sources from which a person derived feelings of hope, security, and pride throughout their lives allows for cultivating this feeling in the present as well. Knowing the things that, from the person's perspective, gave value to their life or made them feel that their life was meaningful in the past allows for planning experiences and endeavors of a similar nature, taking into account their present abilities. On the other hand, knowing the causes of feelings of anxiety and fear as experienced by the person in their youth and throughout their life allows people who come into daily contact with them in the present to avoid situations, conversations, and activities that provoke these negative emotional states.
8. Knowledge about the unique physical characteristics of events and places of residence of a person in his youth and throughout his life makes it possible to plan and design a familiar physical environment that gives the person a sense of belonging and security in the present.
9. Prior knowledge makes it possible to anticipate a significant portion of one's physiological, psychological, social, and spiritual needs and to proactively fulfill these needs before they develop into situations of emotional distress. Numerous studies among older people with memory loss show that human needs that are not immediately adequately addressed contribute to the development of most reactive behaviors.
10. Many family members want to remain involved in the care of their loved ones after they move into a long-term care facility. Learning about the resident's distant past allows the care team to strengthen the bond with the resident's family members. Gathering information about the person's past from family members and friends must be conducted in a structured, comprehensive, and detailed manner, not only during the admission process to the facility (a time when many family members are emotionally overwhelmed), but also throughout the resident's stay there.
11. Learning about the rich history of older adults with memory loss can help reduce ageist perceptions and myths about them. For example, holding ageist perceptions about nursing home residents among care staff can lead to psychological and/or physical abuse of the residents. This knowledge also allows the resident to be treated empathetically and made to feel known and valued.
12. Beyond the daily care of the resident - knowing the person's past, values, and requests as expressed by him during his life regarding how he wants or does not want to receive one or another treatment at the end of his life (while fulfilling advance medical directives) can help honor his requests.

Finally, it is very important to carefully maintain the confidentiality and privacy of residents during the collection and storage of information about their past and at all times during their stay on site.