Patients perspective-English-AS45-July2010-BW

This study describes the illness experience of dementia from the patient’s perspective. Five people with Alzheimer’s disease and their spouses were interviewed and observed during home visits. Thematic analysis revealed two themes: being unsure and trying to be normal. Being unsure describes people’s fluctuating experience of symptoms that leaves them feeling unsure of themselves in a world that is increasingly unfamiliar. Trying to be normal describes people’s efforts to counter the impact of dementia to maintain continuity in their lives. These findings point to the importance of taking into account the patient’s perspective to better understand the experience of living with dementia and develop improved treatment and care practices. Alison Phinney, RN, MSc(A) Living with Dementia PBO 930022142 NPO 049-191 From the patients perspective Please contact the DEMENTIA SA Office Support |Awareness |Education |Counseling |Training |Resource centre |Advocacy [email protected] or [email protected] www.dementiasa.org National Helpline 0860 MEMORY / 0860 636 679 Patients perspective-English-AS45-July2010-BW Dementia is a chronic, progressively debilitating condition affecting large numbers of elderly people. Recent studies from Europe, North America and Asia have estimated a prevalence of at least 8% in those age 65 and older (Rockwood & Stadnyk 1994). Given the pressing concern of how to best care for those afflicted, the study of dementia (most often Alzheimer’s disease) has gained a prominent place in the health care research arena. Literature on the biomedical nature of Alzheimer’s disease is voluminous as scientists struggle to identify an underlying cause and find an effective treatment or cure. At the same time, there is a significent body of literature that has attempted to understand the disease by defining its clinical presentation. Researchers and clinicians have documented stages of decline, patters of cognitive deterioration and behavioural symptoms (Overall, Scott, Rhoades & Lesser 1990; Reisberg, Ferris de Leon & Crook 1988; Taft & Cronin-Stubbs 1995). More recently, research has been directed toward finding better ways of caring for people with dementia. This includes developing effective behaviour management interventions (Beck & Shue 1994; Maas & Buckwalter 1991; Teri 1994) discovering new pharmacologic treatments for the underlying disease and its symptoms (Whitehouse & Voci 1995), and understanding how to meet the needs of family caregivers (Given & Given 1991; Ory et al 1985). However, in all of this research the experiences of the people themselves have been largely overlooked (Cotrell & Shultz 1993).