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PPO 09-315 – HSR&D Study

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PPO 09-315
Feasibility of life review in early dementia: Veterans' experiences remembered
Beverly R Williams PhD
Birmingham VA Medical Center, Birmingham, AL
Birmingham, AL
Funding Period: July 2010 - December 2011

BACKGROUND/RATIONALE:
Dementia is a prevalent condition among older adults, with the incidence expected to increase as the cohort of baby boomers ages. Among veterans, dementia diagnoses and dementia-related health care utilization varies by VISN. From fiscal year 1997 to the first 6 months of fiscal year 2001, the frequency of dementia diagnoses for veterans age 65 years and older ranged from a low 5.8% in VISN 3 to a high of 9.4% in VISN 7, which includes the Birmingham VAMC (BVAMC). Compared to other VA patients over 65, veterans with dementia averaged higher utilization of outpatient psychiatry services and inpatient services, with more hospital stays, discharges, acute bed days, as well as longer lengths of stay.

OBJECTIVE(S):
Objective #1: Determine the feasibility of conducting an individualized, patient-centered, structured life review process with veterans diagnosed with early-stage dementia using a life review guide.
Objective #2: Elicit feedback from participating veterans, allowing them to evaluate the value of their experience in the life review process and the acceptability of the life review guide.

METHODS:
Our approach to this project was qualitative in nature, utilizing qualitative methods of inquiry, analysis and interpretation. Audio-taped interviews were transcribed and analyzed for thematic content.

Participants were 12 veterans diagnosed with early-stage dementia recruited from the BVAMC Geriatric Clinics and the Home-based Primary Care Program who were screened for eligibility by VA clinical staff. To be eligible, veterans had to be aged 65 years or older and have a pre-existing diagnosis of early dementia documented in their VA medical record, of which patients and caregivers were cognizant. This study was conducted between July 2010 and December 2011.

The purpose of the intervention was to recall and reinforce memorable accomplishments and other positive experiences from the past. The life review sessions employed a life review guide for structuring and stimulating memory recall about specific people, events, or eras in the participant's life. The life review guide was in the form of a workbook developed by the Hospice Foundation of America entitled, "A Guide for Recalling and Telling Your Life Story".

Participants took part in a series of 2-4 face-to-face, audio-taped life review sessions. Each session was limited to two hours or less to minimize participant fatigue. The sessions were conducted in a private office in the BVAMC or, in the participant's home. Informal caregivers were invited to be present at the life review sessions. Each session covered different periods of the life course, beginning with childhood and concluding with the present.

Data were transcribed from the participant's audio-recorded life review sessions and entered into the participant's workbook. Participants were given the completed workbook as a keepsake and legacy.

The interviewer made notations during the session and completed a checklist after the session regarding the participant's approach to items in the interview guide, as well as their demeanor, mood, engagement, comfort and distress levels. Participants' levels of physical and emotional comfort and fatigue were noted as well. At the conclusion of the final life review session, the participant was asked to complete a brief survey designed for this study. The survey addressed the suitability and acceptability of the life review process for persons with early dementia and its impact on the participant.

FINDINGS/RESULTS:
Thirty-six patients with early dementia were screened and 12 participants were enrolled in the study. Challenges were encountered during recruitment. Within the geriatric patient population at the BVAMC, barriers included health complications, high co-morbidity burden, and functional dependency. For some, progression of the illness was to the point that the individual have difficulty recalling the past and communicating their memories. Some had already begun to demonstrate mood and personality changes, such as depression and agitation that affected their perception of the study and its perceived value to them.

Other challenges faced were unfavorable opinions about research, low priority placed on research participation due to being overwhelmed by more pressing issues related to meeting basic needs and finally, travel burden.

The mean age was 80 years, and the majority of participants were Caucasian males. Two participants self-identified as African American, and 1 participant as female. The number of life review sessions per participant ranged between 2-4 study visits. Five of the 12 participants were accompanied by a caregiver who attended the sessions. There was some variation in the duration of patient participation in the study, ranging from 3 visits over a period of 4 to 6-weeks to 4 visits over 3-4 months. Ten participants were interviewed in the clinic and the remaining 2 participants took part in the life review sessions in their homes. We were unable to retain 2 of the 12 enrolled patients for the duration of the study due to declining health.

We used data from participant surveys and researcher notes and checklists to assess the feasibility and acceptability of the life review process for veterans with early dementia.

Despite the small size of the sample and the methodological limitations of this study, the findings presented here provide preliminary evidence of the feasibility of life review for persons with early dementia living in the community.

IMPACT:
While the investment in staff time may make such an endeavor difficult to achieve on a large scale, it is recommended for use with patients with early dementia who express an interest in such an activity and who have a cognitive, emotional and physical capacity to engage in life review activities. While it may be possible to train volunteers to assist staff with the intervention, caution is urged due to the vulnerable status of the dementia population and the potentially sensitive content of life review recollections. Family members can be valuable resources in the life review process by encouraging, supporting, and facilitating patient participation. Further work is needed to understand which individuals with early stage dementia are most likely to benefit from life review, as well as to determine who is best positioned to facilitate the life review process.

PUBLICATIONS:

Journal Articles

  1. Williams BR, Bailey A, Woodby LL, Burgio KL, Wittich AR. A room full of chairs around his bed: Being present at the death of a loved one in Veterans Affairs Medical Centers. Journal of death and dying. 2012 May 5; 66(3):231-263.
  2. Williams BR, Zhang Y, Sawyer P, Mujib M, Jones LG, Feller MA, Ekundayo OJ, Aban IB, Love TE, Lott A, Ahmed A. Intrinsic association of widowhood with mortality in community-dwelling older women and men: findings from a prospective propensity-matched population study. The journals of gerontology. Series A, Biological sciences and medical sciences. 2011 Dec 1; 66(12):1360-8.


DRA: Mental, Cognitive and Behavioral Disorders, Aging, Older Veterans' Health and Care
DRE: Treatment - Observational
Keywords: Dementia, Frail elderly, Hospice, Quality of life
MeSH Terms: Dementia, Geriatric Assessment, Aging

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