Archive for the ‘Dementia Research’ Tag

The “By Us For Us” Guides

Written by Laura Bramly

For quite some time now I’ve been meaning to pass along information
about the “By Us For Us” Guides, a set of inspirational and
informative booklets put together FOR people with dementia BY people
with dementia. A group of talented and passionate people got together
and created guides for people with dementia to pass along what they
have learned about strategies for coping and living their lives to the
fullest.

There are currently five booklets available for order for a cost of $1
each on the Murray Alzheimer’s Research and Education Program (MAREP)
Web site at http://www.marep.uwaterloo.ca/products/bufu.html. Detailed
descriptions of each booklet are provided on this Web site.

The five booklets cover the following topics:

Memory Workout: An exercise guide for your mind based on activities
that the authors found helped them to improve or maintain their memory
and quality of life.

Managing Triggers: Triggers that people have experienced and
strategies for gaining back control after becoming agitated.

Enhancing Communication: Different ways of communicating, hidden
meanings, tips on communicating with loved ones and for expressing
emotion.

Enhancing Wellness: Helpful tips for eating well, taking care of your
body, being physically active, staying centered and connected with
others, and living in peace.

Tips & Strategies: Ideas and suggestions for daily living with
dementia, provided BY people living with dementia based on their own
experiences.

Each booklet is full of helpful tips and strategies, all based on real
life experiences of those with dementia and therefore tried and
tested. The booklets are clearly laid out and easy to navigate, and
are between 12 and 16 pages each.

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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.