Approximately five million people in the United States have
Alzheimer's disease. It is now the sixth leading cause of death in the U.S. The
incidence is expected to increase, unless the disease can be treated or
prevented. This prevalence is due in part to the growth of the aging
population. Yet although age is a contributor to Alzheimer's, it is not
necessarily the reason for its development. Alzheimer's is known to be a
disease of the brain that is caused by abnormal plaques and tangles, now
referred to as neurofibrillary tau or tangles. The loss of brain connectivity
between neurons, which transmit messages to different parts of the brain, can
result in a gradual loss of memory, difficulties with language, and increased
confusion and agitation when performing activities of daily living (ADL's) and
executive functioning, such as planning and organization. Thus, people with
Alzheimer's disease may also experience changes in their personalities and behaviors,
which can be misunderstood and highly disturbing to family members, friends and
With the onset of moderate to severe Alzheimer's, other symptoms may appear. These may include problems coping with new situations or an inability to learn new things, difficulty with self-care, and increased impulsivity.
If you or someone you know is experiencing distress, therapy with a marriage and family therapist (MFT) can help.
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If you have concerns about memory, personality or other
behavioral changes, either in yourself or a loved one, it is advisable to
consult a physician. Memory issues are best evaluated and treated by integrated
care, which may include a neurologist, geriatric psychiatrist, and other
professionals like a medical family therapist (MedFT) who specialize in the
management of Alzheimer’s disease. A
complete medical history, both physical and psychological including use of
prescription medications, diet, vitamin use, as well as daily routines should
be addressed. Usually caregivers or family members accompany the individual who
needs an evaluation. It is also important to note that memory loss can be
caused by many other treatable health conditions. Some of these might include contraindications
in medications, a vitaminB12 deficiency, thyroid medications, liver, or kidney
disorders. Early diagnosis of Alzheimer's is critical and can give family members
or the person with Alzheimer's time to make decisions for the future, and plan
accordingly for his or her individual needs.
MFTs can help the family of a person with Alzheimer's understand their grief as a representation of a complicated loss and assist with important transitions that result from a change in the family structure.
Alzheimer's disease affects the entire family. Family members are often called upon to perform and learn new tasks, new forms of communication, and to take on new responsibilities, brought about by the nuances of Alzheimer's. Family members usually have assigned or recognizable roles and corresponding responsibilities. These roles and interactions have been established and maintained over many years. Alzheimer's disease forces family members to revise these roles in order to accommodate the family and the family member with this disease. As a result, conflict and stress will surface. There may be disputes over the distribution of responsibilities, receiving or appreciating unwanted caregiving advice, and understanding the effects of Alzheimer's in general. Multiple challenges facing families through the complex stages of Alzheimer's may include:
Changing family roles, routines and responsibilities: Families must often renegotiate roles as the family member with Alzheimer's declines from the ongoing stages of the disease. Issues related to the abilities of the person with Alzheimer's often create family conflicts. When families begin to recognize difficulties—driving, financial organization and handling money, and other memory concerns— complex decisions are always in order. Overburdening one family member, or ongoing relationship frictions among individuals in the family, will result in the disruption of the family's dynamic. Many families are faced with the need to restructure individual roles. Moving forward all involved members need to familiarize themselves with the disease. This helps find ways to negotiate and distribute responsibilities as fairly as possible.
Communication difficulties: Communication with a family member with Alzheimer's will take on a completely new perspective. Both verbal and non-verbal interactions need to be taken into consideration. Careful word placement, body language, and tone of voice will aid in effective communication. These exchanges must constantly be reexamined as the disease progresses. Since personality and behavioral changes often occur, communicating becomes more complex and frustrating to family members and the loved one with the disease. Struggling to find the right words, repetition, and even hallucinations are not an unusual aspect of the disease. Such difficulties may cause agitation and behavioral disturbances by the care-recipient. Therefore, more understanding is required by the families involved.
Nursing home placement and/or memory care facility: When the roles of family caregivers become too demanding, families often have to decide whether a nursing home or memory care facility is the next step. The financial cost would be weighed as well. Before sending the patient to a facility, professional caregivers are provided in the home. This choice is often made in order to keep the care-recipient in familiar surroundings for as long as possible. However, the time will present itself when the home care-giver will recognize the need for a more permanent placement. This transition is probably the most difficult for families. Nursing homes or memory care placements often result in confusion for the Alzheimer's family member, and an emotional and financial strain on the care-giving family. Family members often feel guilty when there is a need to outsource care and implement a change of environment. In addition, the family member with Alzheimer's would no longer be in a position to understand an explanation for this major change. The family must begin the process of accepting their decision as a positive transition, which will provide proper care for their loved one.
Dealing with grief: Families who have a family member diagnosed with Alzheimer's disease begin to grieve early, as soon as they recognize the changes in their loved one. Unlike grieving the death of a close friend or family member, Alzheimer's grief occurs shortly following the loss of the individual, as you once knew them. This loss will also change you. Family interactions which were once routine, with expected personalities and behaviors, will be altered once Alzheimer's enters the family. New identities are established because of this unfamiliar and sudden new assignment of a caregiver's role. Original goals are transformed as new responsibilities take over. Family members may even lose their jobs due to the demands of care-giving. They may experience a loss of intimacy in a marriage caused by a major change in focus, and see their friendships suffer.
Marriage and family therapists (MFTs) are trained to offer
interventions and prepare families for the difficulties they face once their
loved one is diagnosed with Alzheimer's disease. Some of tools a MFT can offer are:
newly constructed and effective communication- both verbal and non-verbal,
smoothing out family conflicts regarding caregiving decisions and financial
issues, understanding grief as a representation of a complicated loss, and
helping with important transitions that will arise resulting in new family
concerns. Some MFTs are also trained in end of life and hospice care needs.
In addition to Alzheimer’s disease, it is important to note that there are other forms of dementia that present differently from Alzheimer’s disease. These types of dementia also impact brain function and include:
Mild Cognitive Impairment (MCI)
Vascular Dementia (VaD)
Primary Progressive Aphasia (PPA)
Behavioral Variant-Frontotemporal Degeneration (BvFTD)
Lewy Body Dementia (LBD)
Posterior Cortical Atrophy (PCA)
Corticobasal Degeneration (CBD) & Progressive Supranuclear Palsy (PSP)
Creutzfeld-Jakob Disease (CJD)
Alzheimer's Association: This website is the most comprehensive and up-to-date site on the topic of Alzheimer's. There are sections for the person with Alzheimer's and for caregivers. Topics include: diagnosis, treatment options, and advice for caregivers. Resources such as the Caregiver Kit are also available.
Written by Sheryl Stern,MA, LCAT, LMFT
Last updated July 2017