Blog Post Published July 2009

Enhancing the lives of people with advanced dementia

Yesterday I attended a lecture at the Queensland University of Technology presented by Professor Ladislav Volicer. Professor Volicer is currently the Courtesy Full Professor at the School of Aging Studies at the University of South Florida, USA. Twenty years ago Professor Volicer, a recognized international expert on dementia care, established a dementia care unit with a structured palliative care programme for patients with advanced dementia in Prague, Czech Republic.

The lecture was very informative and enlightening if terrifying. The predicted worldwide percentage increase in Alzheimer Disease, which accounts for 70% of the progressive dementias, by the year 2050 is rather alarming for Australia as well as the rest of the world.

Professor Volicer postulated that the main goals of dementia care are the provision of quality of life, dignity and comfort. One aspect of the lecture that was very interesting and relevant for us in recreation care was the notion of a continuous activity programme for advanced Dementia Care. To facilitate such a programme Professor Volicer suggested that recreation staff engage all staff including RNs, nurses, kitchen and support staff and management as well as family and volunteers.

Key aspects of behavior management in people in this stage of dementia proposed by Prof. Volicer were provision of controlled choice and appropriate cuing. These aspects are vital in eliciting behaviour that is conducive to the wellbeing of clients. To support this, Prof. Volicer suggested Activity Programs that can be divided into three areas that accommodate the spectrum from mild dementia to the terminal stage. These areas are; Memory enhancement Program; ‘The Club’ Program; and Namaste Care Program.

Memory enhancement Program - For the mildly affected or first stage dementia. Activities for small groups of clients focusing on a variety of intellectual exercises, socialization, physical exercises, community integration and creative activities.

The Club - For clients in a dementia unit suffering from moderate to severe effects of the disease. The activity program for those people in the dementia unit that attend “The Club” should concentrate on improvement of mood, sleep, and tone as the main objectives for this area, through physical, cognitive and creative activities. For cognitive activities the use of early childhood games was recommended e.g. Sorting, sifting, and scooping. Also presented were the ‘Special Programs’ for individual care, incorporating promotion of functional independence, use of technology and some alternative therapies. Encouraging and heartening statistics were shown on the impact of continuous activities on the variables of medication, weight loss and gain and social isolation.

Namaste Care - Namaste Care Program was created to improve the quality of life in advanced dementia patients. It is carried out in a designated room where comfort and reassurance is offered in a caring and compassionate manner, to all those who enter it. (The term ‘Namaste’ is a Hindu word meaning “to honor the spirit within’ and it was chosen to bring honor to those who no longer know who they are and who they were.) Professor Volicer stressed that quality of life considerations such as the need for sensory stimulation even in terminal cases is important because patients almost never reach a vegetative state - a fact that has been demonstrated in a number of research studies. Professor Volicer nominated depression as a largely overlooked contributor to behaviors of concern and highlighted the fact that it is under-treated and often misdiagnosed. He suggested that depression should be considered for first line treatment for people whose behavior is causing concern.

Considerable emphasis was placed on palliative care which is an integral component of Namatse Care. Prof. Volicer presented findings that challenge conventional management of food and feeding; oral health; and discomfort. The value of artificial feeding and hydrating at end of life was disproved with research findings that showed the counter- productive nature of the practice and highlighted the value of a focus on comfort and reassurance at the end of life – well within the scope of enlightened recreation carers.

I thoroughly enjoyed the lecture and found revealing with lots of food for thought. Be sure to checkout the activities for high care, dementia, and alzheimers disease.

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