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Family Planning for late-stage Alzheimer's care

When patients with Alzheimer 's disease (AD) reach the final stages, their caregivers have grieved physical, cognitive, and behavioral regression for years. Many struggle to make difficult treatment, placement, and intervention choices through a prism of continuous and profound loss. As your loved one's serious decline becomes more evident, the skills and understanding cultured during caregiving can keep you engaged and committed.

End stage changes are often more difficult for family members than patients. Intricate and highly personal decisions can shift focus from comfort and dignity to unresolved personal or relationship issues. Following are tips for making patient-centered determinations in this last period of life:

*Prepare early. The AD journey is eased considerably when placement, treatment, and end-of-life conversations are held in the first stages. Consider using the Five Wishes process to guide and formalize your discussion. Seek financial and legal advice while your loved one can participate. Consider hospice services, spiritual practices, and memorial traditions before they are needed. When caretakers simply implement their loved ones' preferences, they are free to emphasize care and compassion.

*Focus on values. If your loved one did not prepare a living will or advanced directives while competent to do so, act on what you know or feel his wishes are. Make a list of conversations and events that illustrate his views. To the extent possible, consider treatment, placement, and decisions about dying from his vantage point.

*Address family conflicts. Family members vary in their capacities for emotional openness and expression. When stress and grief are heightened by a loved one's deterioration and withdrawal, conflict may result. If you are unable to agree on living arrangements, medical treatment, or end-of-life directives, ask a trained doctor, social worker, or hospice specialist for mediation assistance. Prolonged disagreement can impact your ability to grieve and hamper your well-being.

*Communicate with family members. Choosing a primary decision maker and a communicator to manage information facilitates family involvement and support. Even when families know their loved one's wishes, implementing decisions for or against sustaining or life-prolonging treatments requires communication and coordination.

If children are involved, make efforts to include them. Children need honest, developmentally appropriate information about your loved one's condition and any changes they perceive in you. They can be deeply affected by situations they don't understand, and may benefit from drawing pictures or using puppets to simulate feelings, and hearing stories that explain events in terms they can grasp.