Article Synopsis

by Betsy Belanger and Aerica Richards
Beattie, A., Daker-White, G., Gilliard, J., Means, R.(2004) ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12(4), 359-368.

Dementia is a global cognitive impairment that results in a decline of intellectual function, memory, judgment, abstract thinking, reasoning, as well as personality changes, which ultimately lead to deterioration and death. Typically, dementia occurs in individuals over the age of 65, the most common illness being Alzheimer’s disease (AD). Early-onset dementia includes individuals less than 65 years of age and is increasing its recognition as a growing medical problem. For individuals with early onset dementia, AD accounts for only one-third of cases, and diagnoses such as Lewy body disease, Pick’s disease, vascular dementia, and alcohol-related dementia are all increasing. Consequently, the statistics from dementia involving older populations may not accurately represent the need for services for younger individuals with dementia.

The authors of the article ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services in Health and Social Care in the Community, July 2004, suggest that variation in age and dementia type result in different demands for care and services. These include differences in social and psychological lifestyles. Younger individuals are typically in the work force, in parenting roles, and more physically fit than older individuals. This article focuses on younger individuals with dementia and their views on the services available, their care needs, and their perceptions on experiencing memory problems.

This study interviewed 14 participants under the age of 65 who were using services, and had received a diagnosis of dementia. Analysis of the participants’ comments revealed four major themes: 1). the general experience of living with dementia; 2). issues around dementia diagnoses; 3). the importance of age; and 4). risk and danger issues (p.362).

Many participants reported that living with dementia was bewildering. Being treated as different, invisible, or uninvolved was described as frustrating. Several participants’ expressed that they wanted to be treated as normal or as ordinary people by their families and caregivers. In addition, participants wanted to be involved in their care and to be allowed in the decision making process of their medical care (p.363).

Another aggravation that was revealed from participants was how long it took to receive a diagnosis and how the news was presented to them. Some participants’ felt that the medical professionals were uncaring and blunt when delivering the news of the diagnosis.

Age appeared to be an important factor and participants had different experiences depending on their age. For instance, relatively younger participants attending an older day care center felt out of place. For example, one participant stated, “I feel that in (the older day-care centre), I don’t (belong) because I’m so much younger than they are all of them, you know, so why should they put me there?” (p. 364). However, positive experiences were reported with a mix of ages grouped together at the specialist day-care service. They felt that the specialist day-care service represented a place to meet new friends, and provided opportunities to socialize and engage in meaningful activities.

Reports from interviewees revealed that professionals focus on risk and danger resulting in reduced independence. Risk appears to be defined by health care professionals with little or no input from the younger individuals with dementia. Involving younger individuals in this process may lead to improved services that allow autonomy to continue as long as possible, instead of premature reductions of independence.

In conclusion, this study revealed the importance of early diagnoses, that communication

with younger individuals with dementia was possible, and that they wanted to be included in the decision making process of their care. In addition, the participants’ expressed the desire to be treated as normal human beings. Ultimately, they wanted to be respected and heard.