Dementia Research

written by Chloe Hamilton of Warm Embrace Elder Care

North American society places great value on independence and autonomy. These values are instilled at a young age and persist throughout life. One of the hallmarks of successful independence is the ability to remain living in one’s own home, creating a societal trend toward living in the community and not in a facility during the entire aging process.

Aging can take many forms and is a unique experience for each individual. Aging at home is preferable for many seniors, regardless of health or ability. While dementia is not an inevitable part of aging, it is an illness that does afflict some seniors and drastically influences their experience in living in the community.

The increasing trend towards independent living, combined with the rapidly aging population is focusing current research on the experience of living with dementia. Dr. Lorna DeWitt, is one such researcher whose doctoral thesis (at McMaster University) is based on qualitative research of people who live alone in the community with dementia. Her work is more detailed than a mere survey of family members; she asks probing questions of the dementia sufferers themselves. Due to the sensitive nature of the questions she asks, she struggled to find suitable and willing study participants.

Dr. DeWitt focused on individual interviews with dementia sufferers to gain a better sense of how those individuals feel. She found that her participants wanted to hold onto the “now” without thinking about the future, if possible. When asked about their plans for the future, many participants admitted that eventually they would not be able to remain alone, but they quickly focused to how they were managing to cope in the present.

They described their homes or apartments as “dead space” without the infused life of the television. For many of her participants, their connection to the outside world was predominantly through watching television or looking out the window to watch community activity.

The participants communicated their desire that others understand the importance of including the dementia sufferer in any decision making. Retaining a sense of control and independence is crucial, and is often the primary motivation behind living in the community rather than in a facility. Decisions about daily living and routine, such as bedtime, what to wear, or which program to watch on television, grant the individual a sense of control over their environment.

Although dementia sufferers may not be able to weigh the pros and cons of more serious decisions, they still need to be included in the process. The feeling of involvement often results in a more receptive response to change whereas imposed change without warning can result in resentment and hostility.

The participants responded that one of their greatest challenges is hiding the disease of dementia. Admitting the diagnosis of dementia to others makes one quite vulnerable, and asking for help can be overwhelming. Sadly, this can isolate dementia sufferers who reduce their social connections in an attempt to keep their illness unknown. Fear of the unknown intensifies as one worries about others discovering their illness and further removing any independence that the individual has retained.

The societal value of independence does not disappear when one is diagnosed with dementia; instead, it alters the form of independence that one may experience.  Retaining independence and a sense of control over environment is still vital to one’s happiness and well-being.

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