While changes may be subtle at first, the truth is that learning to cope with a continually shifting “new normal” can be daunting. This article documents all the early steps you can take – and decisions to consider – to make the transition as smooth as possible.
Setting Out
"The change is always in us," says Kerry Mills, nationally recognized dementia coach and author ofI Care: A Handbook for Care Partners of People with Dementia. "We can't change a person with dementia, so we will always have to change ourselves to be able to see a difference in the situation."
Building Your Team
Ideally, you and your loved one have already had a lengthy discussion about what lies ahead. If you are not going to be the primary caregiver, whoever is taking on this responsibility should be included in meetings from as early a stage as possible. If the primary care provider is not a geriatric specialist, now may be the time to consider a switch, or add a geriatric behavioral psychologist to the team.
Specialists are often more current on new clinical studies and are experts in dealing with issues like agitation, sleep disturbances, paranoia and coping with impaired thoughts. Make sure to review any new medications or changes in medications with each practitioner.
Local support groups are very helpful. "Finding a good group that is just for spouses will help you find out the things doctors and other professionals don't tell you," says Allen Vann, whose wife Claire was diagnosed with early-onset Alzheimer's eight years ago at age 63.
Partner with primary care provider to coordinate all facets of health care and manage medications. If the doctor or nurse practitioner is already part of a patient-centered medical home – a model of care where one provider is the point person to coordinate all other services: specialists, tests, medications or home care – then it will be easier for everyone to stay on top of changes in disease progression, medications or manage problems.
"Most older people are already juggling several chronic conditions, with multiple providers and multiple medications," said Susan Reinhard, PhD, RN, Senior Vice President for Policy at the American Association of Retired Persons. "When you lay Alzheimer's on top of that can it can be a real challenge to ensure that that people get the right care at the right time."
Participating in a managed care network like the Kaiser Health System – Kaiser Permanente is a tightly integrated payment and health care delivery arrangement that offers high quality services at the lowest possible cost – may result in more seamless care coordination. All clinicians within the network have access to the person's electronic medical records.
Check your loved one's current health plan and consider alternatives during the open enrollment period if you're not satisfied with the level of care coordination or communication among providers.
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Then, of course… family. Gerry Polnivy, 86, relies on her daughter to help keep track of the many clinical appointments and medications for her husband, who is in the mild stage of the disease. "She keeps a calendar and writes all the appointments on it and when to give each medication," she explains.
Polnivy’s husband sees a cardiologist, neurologist, and urologist in addition to regular visits to their primary physician. “I don’t know how I’d manage all of this without her help,” she says.
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About this article: Get with the Program is one of an 8-part series provided to the ajc.com by Alzlive.com - a distinct voice in the online caregiver landscape, devoted to family who are caring for those with Alzheimer's or other dementia.
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