Family caregivers and decisionmakers in the complex care of dementia patients

Tha AARP and the National Alliance for Caregiving report that there are 40 million Americans taking care of family members with dementia such as Alzheimer’s Disease, cancer, and other debilitating chronic diseases, or physical disabilities, and that 25% of the caregivers are under 35 years old. The medical issues can be complex. There can be myriad medications to manage and the side effects can impact the patient’s cognitive ability, response time and behaviors. The family caregiver needs to be companion, advocate, assessor of unusual clinical responses, emergency manager, monitor of symptoms, transportation provider, and assistant for decision-making. They may or may not have received specific training in the care the patient requires. Should the caregiver also have authority to actually make decisions on behalf of the patient? Maybe yes, maybe no. It depends on the circumstances.

The line between the work of caregiving and the authority for decisions can get blurry. It’s important to discuss this subject when preparing powers of attorney.  At times, one child is given authority as Power of Attorney and Health Care Representative, and then also moves in and becomes the 24/7 caregiver when the parent can no longer safely live on their own. If the same person is responsible for all caregiving and all financial matters, it can be truly overwhelming and there could be a loss of objectivity.When a person requires 24/7 care and a devoted family member is the full-time caregiver, expanding the team and  dividing up the responsibilities can go a long way to make the job more manageable, and assure that the whole picture is being seen. Perhaps one person should have authority over the assets, income, bills and contracts, and another person should have responsibility for health care decision-making. Sometimes the person providing the live-in care should be the health care decision-maker, but not necessarily.

To guarantee broader input and communication, a patient may want to divide up the roles. But again, this is simply not always possible. The family may be small, or most of the family may be far away, or there may be other family dynamics in play.

There are ways to ensure collaboration between caregiver and the designated agents. For example, the financial Power of Attorney and the health care proxy or advance directive documents documents can obligate each designated agent to  share information  with the other and to consult with each other. The person who is the general agent under the power of attorney could be given the authority to delegate some power to the person who is the live-in caregiver so that they can manage some reasonable size bank account on a day to day basis in case there’s a need to buy things. Or they can be given authority to utilize  a debit card on the patient’s bank account with a certain limit.

Another idea is that the financial power of attorney document can expressly allow a family member to be hired as a live-in caregiver, and can direct the Agent to pay a wage that’s in line with similar occupations. When caregiving is paid for, it eases the economic pressures on the care giver, but it does raise other issues such as wage & hour laws and potential Medicaid scrutiny if the parent runs out of money within 5 years and applies for Medicaid benefits.

No matter what, either the patient or their authorized agent may want to sign HIPPA release forms for certain purposes so that the caregiver can access the relevant health care information that’s needed for them to do their job.

For legal advice on elder care planning, caregiver employment, and estate planning, call us at … 732-382-6070.

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