There are many types of dementia. Alzheimer’s disease and related disorders, such as Vascular dementia due to multiple small strokes, Frontal-Temporal dementia, or Lewy Body disease which may accompany Parkinson’s disease, are the most common progressive, neurological illnesses that have a degenerative course. Despite the progressive nature of these illnesses, people with a dementia may live 8- 15 years following diagnosis. This means that the patient and family must contend with declining abilities to maintain independent functioning, including significant impairments in memory, and in self-awareness for many years. Changes in independent functioning such as these are deeply troublesome for all concerned.

      For the person with the illness, the experience of loss of these abilities means he or she may experience a profound sense of insecurity as well as a loss of independence and control over their lives. Or, the person may appear unaware or “in denial” about these changes. Sometimes people with a dementia lash out at those who care for them or withdraw, isolating themselves from the world. Not uncommonly, families must learn to communicate effectively in new ways and learn to care for themselves while coping with the debilitating changes they see in their loved one.

      Based upon over twenty years experience working with older adults and families, I have found that there are two significant factors that must be addressed in the context of caring for someone with Alzheimer’s or some other form of dementia.

      It essential for the person with the illness to continue to experience him or herself as a valued adult.

      The kind of stigma associated with disabling disease is particularly marked with dementia. Many who are diagnosed struggle with the decision about who to tell because of fears of being treated as less than who they are and have been. Many with dementia fear that even in their own families, they will lose the respect or roles they have held, or lose the sense of connection that has become important to them. Hence, treatment involves assisting the person in maintaining self-esteem, learning to tolerate loss, and safeguarding remaining skills. The focus is on continued adaptation even in the face of loss. It has been my experience that by-in-large, these goals can be reached if the person is capable of acknowledging their deficits. Depression and anxiety, in conjunction with good medical care, can be mitigated through psychotherapy in the early stages of illness.

      Caregiving in this context means learning to be responsive to the changes in communication, independence, and behavior of the person with dementia.

      Just this task alone would be more than most of us could cope with, but additionally, there is the loss of the person- his or her role in the family, their presence as an active, engaged person, and the loss of the intimacy that one may have had with this person. Caregiving is complex, exhausting, and above all, stressful. This is especially true when the patient cannot acknowledge deficit or when he or she is physically or verbally aggressive. Sometimes caregiving affects the caregiver’s physical well-being and/or their mental health. Caregivers are vulnerable to developing depression and anxiety as well as physical illness. It has been my experience that caregivers benefit from psychotherapy through learning better problem-solving and communication skills, developing self-care strategies, as well as having the opportunity to work through their grief over what has befallen them.

      My approach to Alzheimer’s disease is to work closely, where appropriate, with other professionals, including physicians, geriatric care managers, social workers, and speech pathologists. I also utilize the services available from the Alzheimer’s Association, including referral to their many support groups, help line, and case management services.