“I need help. I have no idea what to do". These were the words from my friend who was at her wit's end. She was in her sixties, trying to help a friend who had begun to slowly lose herself. Their friendship went back decades- they had grown up and grown old together.
And my friend was very aware that her friend was slowly forgetting things. It has been on her
list of things to do- to make sure that her friend asked her doctor.
March came and went. The world shut down. Activities for older adults screeched to a halt. Routines became upended. The familiarity of volunteering at the library that had given a routine and foundation gave way to being locked up at home with occasional forays to the grocery store. Living across town from her friend, my friend colleague drove her best friend for a consultation only to be told what she already knew – that her friend had dementia. She was left to help figure out what to do. Her friend had days that were good and others that were not. Was she safe to stay home alone? Would she burn the house down?
Memory loss is common as we age. Dementia is the medical term when loss of memory, language, problem-solving and other thinking abilities become severe, to the extent that there is a disruption of daily life. Most of us know someone with dementia – it is all around us.
And during this pandemic, the memory tests have been brought to the headlines, with the President’s twitter handle claiming perfect score. Also, in the news are loved ones sharing innovative ways to hug grandparents or taking jobs in health care facilities to be near their loved ones.
Pandemic life has limited the care of an already fragile population.
Most people are faced with – will I bring the disease to my loved one? Is it better to stay away, than make them ill? The answer is highly individualized. If your loved one had a routine that is not possible due to COVID, then helping them plan a new routine is very important.
As I began helping my friend, I started to put together a list of questions for her doctor:
My friend lives alone – she has been diagnosed by her neurologist with dementia- is it safe? What can I do to help her? In my practice, when I diagnose memory loss especially for a senior who lives alone, the first thing that I do is to request a home safety evaluation. It is tricky: during pandemic times it is important that the nurse doing the home visit is gowned and masked to ensure that they do not make the patient ill. Based on the severity and insurances, there are a few options.
Is there a case manager or a social worker who can help me? In the US, especially in most metropolitan areas, many primary care practices belong to networks called Accountable Care Organizations – who help Medicare members navigate their care. There is a myriad of care options most dependent on social support, finances and insurances. Social workers of care managers help with insurance eligibility and placements in residential facilities.
Do medications help? There is unfortunately no cure for dementia. In some cases of early memory loss, medications help reduce the progression. But medications can also cause confusion and memory loss – So do go over medications with a fine toothed comb with your doctor.
My friend drives – it is essential to assess the degree of functional impairment and ensure safety. Loss of driving is a major milestone and one that often cases worsening of the mental state due to lack of independence.
My friend has family but is estranged – how can I help? This one is very tricky. If you have a health care power of attorney, then you can make decisions if your friend does not have the ability to make decisions. Share the health care power of attorney with your loved one’s doctor. Sometimes family meetings are needed to come up with a plan of care. In most cases, patients are able to provide input into their care plans.
Advance Directives – Dementia is a disease that is slowly progressive. Most often, patients with dementia die of other causes such as heart disease or infections. Based on what your loved one would have wanted, patients and families make decisions that range from Do not Resuscitate, withholding care to provide care based on the underlying ailment (full code) which includes CPR and connecting to a machine if they need breathing. It is important for families and care givers to have this conversation early and ensure that all doctors, care facilities have a copy. I recommend having a copy on the fridge or in an accessible area.
Who is part of the care team? It is not unusual for patients to have large care teams and multiple specialists. It is important to go over the doctors and whether they are really needed, to ensure that the care is well coordinated. Ask your primary doctor or geriatrician whether they can manage care.
Develop a regular pandemic routine – if your loved one is able to walk – going out for exercise is important. Ensuring that the mealtimes and bed times have a routine helps.
Caregiver fatigue – it is important to ensure that friends and family take care of themselves. As the condition progresses the burden of caregiving becomes very important.
Ensuring a COVID plan – with the pandemic, families and friends of loved ones have limited visitation rights in an effort to containing the spread. Loneliness may cause significant deterioration of the condition. Digital tools may help but often patients need help starting FaceTime or Skype calls.
Our current quarantine and isolation come at a cost- both for patients and their loved ones. The pandemic has exposed the limitations of our health care system and our community. If you are the caregiver for loved one with dementia – take time to care for yourself. Please ask for help.
Below is a list of resources and websites that I use for my patients.
US - https://www.alz.org/
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