Every morning, hundreds of thousands of South Africans wake up and wonder, “What will I face today?”
An estimated 650 000 people in South Africa suffer with Alzheimer’s Disease or another dementia. As many as 70% are cared for at home by close family members.
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Although every family’s experience of Alzheimer’s Disease is different, studies show that family caregivers can feel isolated, anxious or overwhelmed. Some symptoms seem to get better, while others grow worse. Over time, a caregiver’s social circles and family dynamic may become strained as a result of complex symptoms like repeated questions and inappropriateness. In some cases, caregiver stress can take a serious toll on their loved one.
One new technology aims to "lighten the load" on Alzheimer’s caregivers.
Management tool DementiaGuide (www.dementiaguide.ca) is a new kind of “family-centered disease management” tool that encourages Alzheimer’s caregivers to play a more active role in their loved one’s care.
For decades, pen-and-paper symptom diaries were recommended by doctors and support groups as a way to monitor Alzheimer’s Disease. But without a systematic way of looking at the ‘big picture’ – symptom by symptom, month by month – it can be difficult to make any sense of a person’s overall condition.
Dr Kenneth Rockwood, an internationally-recognised geriatric specialist in Canada, founded DementiaGuide to create an easy-to-use, helpful website based on 10 years of clinical research. The company hopes it will reduce “caregiver burden” and boost quality of life for Alzheimer’s patients. Technologies have been developed to self-manage diabetes, heart disease and other chronic illnesses, but DementiaGuide is the first to address Alzheimer’s Disease and other dementias, and the first to involve family caregivers in a meaningful way.
One of DementiaGuide’s founding principles was that it should help caregivers “share the load”. One person tends to be the primary caregiver in most families. “Other family members may be doing very little, and feel tremendously guilty about it,” says Dr. Rockwood. “It is hard for everyone involved – how can those who live away provide support both emotionally and in day-to-day care? How can primary caregivers portray the situation accurately, keep the lines of communication open, and gain the support they need?”
Changing behavious Until now, family caregivers had no easy way to understand or discuss how Alzheimer’s symptoms and behaviours change over time. DementiaGuide is based on the idea that family caregivers can help an Alzheimer’s patient – and themselves – by tracking symptom information in a confidential online database at www.dementiaguide.ca.
The website allows caregivers to research Alzheimer’s Disease medications, stages and over 60 symptoms on DementiaGuide’s free resource. In addition to its personalised disease-tracking tool, DementiaGuide subscribers can access specific symptom-management strategies that help caregivers find new ways of managing complex behaviours at home, including repeated questions, sleep disturbances, aggression, and confusion.
From their personalised DementiaGuide profile, caregivers can also produce easy-to-read symptom reports to use as conversation starters. “It was difficult for my sister to understand what we were really going through,” said one man who cared for his late father for over eight years. “We could have said, ‘As you can see, we are having trouble in this area - maybe you could help.’”
DementiaGuide also gives doctors a way to see, in an organised fashion, how treatments are working and what other options may be necessary.
Quality of care What is truly unique is that DementiaGuide can affect the quality of care provided to the person diagnosed with the illness. By including DementiaGuide in care decisions and disease management strategies, families may be able to cope longer at home, and delay the need for expensive long-term care.
“Ultimately,” says Dr. Rockwood, “We expect DementiaGuide will play a significant role in keeping the family healthier, and the patient at home longer.”
Although the company expects that family doctors will be open to self-help tools like DementiaGuide, empowering caregivers may change the doctor-patient dynamic by encouraging family caregivers to be more assertive. “Of course, there is no replacement for clinical adjudication even after a diagnosis is made,” says Dr. Rockwood. “Physicians will make the best decisions for their patients, however caregivers that can give voice to symptom changes, and point out areas of specific concern, are invaluable in a 15-minute doctor’s appointment.”
DementiaGuide was initially released on World Alzheimer’s Day, September 21st, 2006. A second release is anticipated in mid-2007. A 60-day free trial period is available by visiting www.dementiaguide.ca. - Kathryn Cosgrove, February 2007.
For more information visit:
Dementia SA: http://www.dementiasa.org/ or Alzheimer’s South Africa: http://www.alzheimers.org.za/
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