By Susan J. Harper, LSW, ACSW

	When to Start Planning
	How to Start Planning
	Factors to Consider in Deciding to Provide Care in the Home

When to Start Planning

The answer to this question, in light of the facts is very simple – now! At the very least, planning should begin when the diagnosis is confirmed by a medical professional. The shock of the diagnosis may be mixed with relief at now having a name and a reason for the changes that have been observed by others and experienced by the individual.

Because of the importance of involving the patient in planning his or her future, assistance with making the important decisions surrounding this illness are best addressed early while the individual is able to participate in the process.

Legal issues, such as the development of Advanced Directives and appointing a Medical Power of Attorney as well as creation of a will and appointment of a financial Power of Attorney are appropriate at this point, if not already in place. These can only be developed by a capacitated individual, and thus will not be possible later. Because regulations surrounding these documents vary from state to state, the Caregiver needs to research the laws where the Care Receiver is living.

How to Start Planning

Caregiving requires a three-pronged approach. Three groups need to be part of the team:

1. Professional caregivers, such as doctors, nurses, therapists, social workers, care managers;
2. Family caregivers including immediate and extended family, church members, neighbors, civic groups, friends; and
3. Care Receiver.

The goals are optimal level of functioning and enhancement of quality of life for everyone involved.

Although it is true that generally one individual is identified as the Primary Caregiver, the team approach is useful in knowing that this is not a responsibility that any one person is capable of managing independently. A group meeting of all who will participate in the long term care of the individual is appropriate to devise a plan of care, knowing that over time this plan and the membership of the group will change as needs change and become greater. At these meetings, it is important to stick to the facts and not argue. Having a moderator, such as a professional care manager can provide guidance with what has worked with others, and also to assist with concerns if there are disputes between family members. It is vital to discuss issues, such as others joining the team, some leaving due to other commitments, and personal issues such as their own health concerns. Be prepared to reassess every few months, more often as needed or if there is a dramatic change in the status of the care receiver, care giver, or available supports.

When asking for help, be specific about the need. People respond better when they know specifically what they can do to help. Being asked to go shopping is easily understood, whereas being asked to ‘help’ is less tangible. Having a back up plan is essential. Do not hesitate to have a back up person. Write down schedules and give a copy of the schedule to everyone involved.

There are many individuals who interact with the Care Receiver on a regular basis, and they, too can also be of assistance with observations and ideas. Consider the paper carrier, mail carrier, superintendent of the apartment building, barber or beautician, neighbors, friends, and any others who may interact with the patient from time to time.

Be honest with children, and involve them in an age appropriate manner. Smaller children can visit, draw pictures, and send cards, thus bringing joy to the Care Receiver; older children can assist with errands, cooking, and other tasks.

Factors to Consider in Deciding to Provide Care in the Home

• The health of the caregiver.
• The proximity of the caregiver to the care receiver – will relocation be needed and is it possible? Also, if relocation is needed, who is going to move? Moving the care receiver away from a familiar environment can have an immediate and lasting effect on functioning. If the caregiver feels forced to move, there might be resentment that can impact care.
• Level of care needed. This will change over time.
• Existence of a back up plan for emergencies.
• Resources to hire outside help if needed.
• Ability of the individual with dementia to accept other caregivers.
• Emotional support for all family members.
• Location of valuable papers, such as will, living will, birth certificate, bank account numbers, insurance policies, retirement plans, etc.
• The availability of respite.
• Finding a good Primary Care Physician.

Finding a knowledgeable Primary Care Physician who can assist with diagnosing and treating any possible coexisting conditions that already exist or may develop in addition to AD is essential. More than one doctor may be needed to address different aspects of care, however it is always a good idea to have one doctor who has all of the records and information. A good Primary Care Physician will be able to assist with education as to signs and symptoms that are indicators that something is wrong or changing. Also, as a caregiver, you are in the best position to know when ‘something is wrong or different’ due to daily interaction with the individual. Because the demented individual is in time unable to communicate what the problem is, the caregiver needs to document any changes in appearance or behavior, no matter how insignificant they appear to be, and be able to tell the Primary Care Physician what is happening. An added bonus is doctors or nurses that will make house calls on a regular basis, and thus see the individual in their environment.