Alzheimer's disease and related dementias are progressive conditions that necessitate planning ahead for legal/financial decisions, supportive services, and medical decisions. As the person with dementia loses the ability to make choices and plan, the family caregiver(s) assume more of this responsibility.
Looking ahead before a crisis develops can help to ease the burden and emotional stress of caregivers who are learning to adapt to new roles and responsibilities as the illness progresses. Even in the very early stages, planning for the future is beneficial and can help with decisions in the later stages when the person with dementia is unable to participate. No matter the stage of the illness, it is good to review or update the plans.
In the early stages of dementia, the following considerations should be addressed:
• Review, complete or update Advance Directives, including Medical Power of Attorney, Mental Health Power of Attorney and Living Will. Well spouses may consider changing their decision makers from the spouse who has dementia as this role will likely become too difficult for them.
• Review or establish a Durable Financial Power of Attorney with a trusted representative.
• Share these documents with the primary and back up decision makers. Be sure that all parties involved have copies of the documents and are aware of their roles. It is essential that these back up decision makers will represent your medical and financial wishes.
• Does the person with dementia have a long term care insurance policy? If so, become familiar with the policy and what is covered so it can be used when more care is needed.
• Meet with an elder law attorney to review or establish powers of attorney or help with long term care financial planning.
• If the person with dementia is living alone, have a discussion about where he/she would want to live when more care is needed. Be cautious not to make promises that cannot be kept as this can create guilt for the caregiver who made the promise.
• Some couples may want to downsize to a smaller residence, relocate closer to family supports, or move into a retirement community with progressive levels of care and services readily available. If you are planning a move, now is the time to do so to allow the person with dementia to get acquainted with a new residence/location.
As the person with dementia progresses into the moderate stage of the illness, more services may be needed to provide respite for the primary caregiver and/or an alternative safe living environment for the person. Caregivers must take care of themselves in order to care for the person with memory loss. It is very easy to put off medical appointments, spending time with friends, or just having alone time. It is helpful to begin exploring both formal and informal resources for care. Informal resources can be family or friends that can spend time with the person with dementia. Do not be afraid to ask for help as people may be very willing to step in. Create a list of ways family and friends can help so that when they ask, you are ready to tell them specifically what you need.
Formal resources can include in-home care or an adult day health program. If the caregiver needs to take a trip or have a medical procedure, a short respite stay in assisted living may be necessary. At some point, the person with dementia may need a higher level of care.
Considerations for planning in the moderate stage include:
• Investigate adult day health centers for the person with dementia to attend. Many people enjoy the socialization and cognitive stimulation of these centers once it becomes part of their routine.
• Consider hiring an in-home caregiver/companion to spend time with the person with dementia for pleasurable activities or outings. Even a few hours away from home can benefit the primary caregiver.
• If an eventual move to assisted living is necessary, begin looking in advance at your leisure. This allows the family time to compare centers and make a thorough assessment of the options available.
• Some assisted living memory centers have a day program that allows the person with dementia to become familiar and comfortable in the setting if a move is considered to that location at a later date.
• This would be the time to activate the long term care insurance policy if there is one. Other programs to apply for may be VA Aid and Attendance. A visit with an elder law attorney may be helpful in securing benefits.
• Ask for all medications to be reviewed with the primary care provider (PCP) and specialists as some medications may no longer be warranted. Discuss the benefit of ongoing preventive care such as mammograms, colonoscopy, etc. with the PCP as procedures create undue stress and discomfort for both the person and family.
Finally, in the advanced stages, the person with dementia is impaired with most daily activities. If they are at home, full time care is needed or the person may be in a residential care setting.
Considerations for the advanced stage:
• This may be the time to complete the orange 'Do Not Resuscitate' form and place it on the refrigerator at home if your goal is to keep the person out of the hospital.
• It is helpful to review the living will to be aware of the person with dementia's directives on care and discuss this with family members so everybody is aware and understands. the intended plan of care for comfort care. Remember, hospitals pose great discomfort and burden on the person with advanced dementia with very little gain. It is important the family is aligned in this goal of keeping the person in the "home" whether it be in the family home or residential setting.
• Consider asking for a Hospice evaluation as they can provide additional care and supportive services under the Medicare or other insurance benefit.
• Simplify medications, especially if swallowing becomes difficult. While thinking and planning ahead is stressful, it will provide great peace of mind knowing that the family (and sometimes the person) have thoughtfully discussed medical, financial and care preferences.