Resources & Tools

*Titles listed alphabetically

A Family in Crisis: Legal Responses and Alternatives

Description
A 90-minute video of an interactive teleconference. The format presents a son, "Ben", who assumes responsibility for his father's dementia, his mother's frailty, and a younger brother with developmental disabilities. Attorneys from the Montana Office on Aging and the Montana Advocacy Program respond to Ben's situation. Various legal options are presented including conservator, power of attorney, and legal guardianship.

Created: March 1996
Format: Video
Purpose: Specialized education
Targeted Cultural Group: General
Author/Producer: Montana Office on Aging, Ann O. Johnson, Ed.D., Executive Producer, Montana Alzheimer's Demonstration Project, The Montana Office on Aging, and the Montana Advocacy Program
Comment:
Contact Source: Ann Johnson
Phone numbers: (406) 582-1492
Audience: Families, general public, service providers, caregivers, and support groups

Advance Support Group Leader Training, Parts 1 and 2: Responding to Difficult Personalities and Responding to Difficult Situations

Description
Videos and training manuals designed for Alzheimer's support group leaders and students that will enable them to learn to deal with difficult personalities and situations. This was a collaborative effort between the Alzheimer's Association--Atlanta Chapter and the Georgia Division of Aging Services.

Created: Fall 1995
Format: Video
Purpose: Training
Targeted Cultural Group: General
Author/Producer: Alzheimer's Association Atlanta Area Chapter
Comment:
Contact Source: Gloria Bass, Atlanta Area Chapter of the Alzheimer's Association
Phone numbers: (404) 728-1181
Audience: Support groups and general public

Alone But Not Forgotten

Description
This upbeat video details the lives of two women who live alone and their formal caregivers. All of the subjects--both the care recipients and the paid caregivers--are warm and engaging and it is often difficult to believe that the elderly women have dementia, except for their slight forgetfulness. The video is an excellent one for the public since it offers scenes of day care, homemaker and transportation services. This video is also great for gaining community support and recognition for in-home and community based services.

General public, caregivers, and service providers

Families, caregivers, direct care providers, and service providers

Families

Families, caregivers, direct service providers and service providers

Caregivers, families, and health professionals

This in-depth series of six modules covers a range of topics relating to Alzheimer’s disease in a discussion format. Hosted by Dwight Baine, a family counselor, the roundtables are composed of a changing group of professionals with expertise in the module’s topic area. Caregivers are also included in these discussion groups.

Module I is devoted to Ideas for Caregivers and includes a family counselor and neuropsychologist who discuss the diagnosis and assessments methods used in determining if a patient has Alzheimer’s. They note that blood tests, EEG’s, CAT Scans, and MRI’s can be used to rule out other possible causes of dementia. They also note that AD patients can be fine one day and bad the next, and that anger, sadness, and frustration are common among AD patients. The course of Alzheimer’s disease typically lasts 12 years, but there is wide variation, ranging from 2 to 20 years. The discussion participants stress the importance of caregivers seeking out resources that can help them including respite and legal counsel.

Module II stresses the importance of trying to preserve the AD patient’s world, as he or she has known it. The program participants urge families to deal with legal, financial and death issues early on while the AD patient is able to participate in the decision process. The participants also discuss support groups, assessments, care managers, respite, adult day care, assisted living, nursing homes, and home care services.

Module III discusses “How Safe Is Safe?” The participants note that judgment, reasoning, and orientation to people and surroundings all impact on our safety. The AD patient’s physical abilities, especially balance, gait and visual perception, impact on the likelihood of falls. Starting fires, whether accidentally or intentionally, and wandering are serious safety concerns.

The discussion participants also describe the 6-level cognitive scale that can help to determine how much care a persons needs. Level 6 is normal functioning. Persons with level 5 function don’t plan ahead, while level 4 patients are goal specific and don’t scan their environment for cues before acting. Level 3 patients tend to be restless and hoard things, while they can still perform ADL’s, they cannot do them well. Patients with level 2 functioning need 24-hour assistance and are focused on their posture and staying stable. Those at level one are focused on their senses so that it may be necessary to tell them to chew and swallow their food.

Safety proofing the AD patient’s home can include handrails, placing tape on the stairs to help with visual perception, locking up hazardous materials, like paint removers, lowering the temperature on the hot water heater, making the stove inoperable when it is not being used by someone who is competent, getting rid of clutter and scatter rugs which can cause tripping, and putting grab bars in the tub to prevent falls and aid in getting out of the tub.

Module IV is devoted to bathing, dressing and mealtimes. The panel’s speech pathologist suggests limiting choices for AD patients regarding food and clothing since decision-making can be difficult for them. It is best to designate a dressing spot that the patient is used to, to label draws for socks, sweaters, etc., and to put all of the components of an outfit on one hangar to simplify the decision making process in dressing.

At mealtimes, it is good to keep distractions to a minimum and to maintain previous dining routines as much as possible. If the patient has difficulty in handling flatware, finger foods can be good alternatives. Soft foods can be given to AD patients who have difficulty chewing while pureed foods and thickened liquids can decrease the chance of choking for those with swallowing difficulties. It is also important to note any problems that the patient may be having with chewing and swallowing and to check their teeth and mouth for ulcers.

In bathing a patient with AD, it is important to check the room and water temperatures. It is best to set up the room beforehand so that towels, soap, shampoo, etc. are easy to reach. Using a tub seat can help to prevent falls. It is also important to ensure that the area under skin folds in properly cleaned.

Incontinence is common among AD patients so it is important to ensure that they are kept clean and dry. Other problems to look for are dehydration, infections, constipation, and prostate problems. Tugging at their pants may indicate that the AD patient needs to go to the bathroom or has already had an accident.

Module V, “Behavior Is Communication”, discusses the importance of interpreting actions among AD patients who cannot verbalize their feelings and needs. Pacing can indicate anxiety. Loud noises can cause fear and combative behavior. Asking the AD patient to perform complex tasks and arguing also can cause combative behavior. It is important for the caregiver to try to link triggers to behavior. While repetitive behavior can be comforting to the patient, it may bother the caregiver. It is best to focus on pleasant experiences, to make routines as pleasant, simple, and non-threatening as possible, and to change the focus rather than arguing with the AD patient. Although it is not always easy, caregivers should not take offense at cruel remarks or accusations. Patience, love, understanding and affectionate hugs can go a long way in making the caregiving experience more positive and rewarding for the caregiver and the patient with Alzheimer’s disease.

The final Module VI deals with end of life issues including palliative and comfort care. The panel discussants include the pastor and director of the Vistas Hospice Program and an expert on providing end of life care to members of minority groups. End stage Alzheimer’s patients are often unable to speak coherently, have swallowing difficulties and are confined to bed. This can be a very difficult time for caregivers who often feel overwhelmed and who are emotionally and physically exhausted.

Special care must be taken with patients at this time since they are usually confined to bed. To prevent pressure ulcers, it is important to turn AD patients every few hours and to ensure that their sheets are clean and smooth. Personal hygiene is equally important since end stage patients are incontinent.

The panel members repeatedly stressed the importance of showing love to the patient through kissing, hugs, backrubs, massages and other expressions of caring and concern. Music can also be an important adjunct to care, especially music that the patient has always liked. It is often helpful to families who are members of minority groups to have a cultural broker. The broker can serve as a liaison between the patient’s family and other care providers. Cultural brokers have a good understanding of the views and attitudes of the particular group and can facilitate the caregiving process with agencies that are not familiar with their special language, religious and/or cultural needs.

During the anticipated last six months of life, AD patients are eligible for care under the Hospice program which is covered through Medicare. Hospice provides a range of services from physician, nurse, and home health care visits to pastoral counseling and palliative and comfort care products and services. The panel members from Hospice pointed out that in the final stages of Alzheimer’s, caregivers may have to face some tough choices such as whether to use a feeding tube if the patient is subject to serious swallowing problems that lead to aspiration or if they refuse to eat or drink.

They noted that patients who refuse to eat or drink often do not feel hunger or thirst and even if a feeding tube is inserted there is no guarantee that their body can absorb nourishment because their digestive function is shutting down. Nevertheless, the ethical and moral views of some caregivers may make it difficult or impossible for them to see their loved one go without nourishment. They noted that heroic attempts on the part of caregivers often do little more than prolong the dying process and that attempts at resuscitation are very hard on frail, debilitated patients. They urged that end of life issues be addressed before the patient has reached the point where he or she cannot make decisions about what measures, if any, should be taken to prolong life.

Health professionals and caregivers

Description
These two video modules are designed for paraprofessional and professional health care providers who work in a physician office setting. Module I discusses the physiological changes that accompany AD. It provides a good explanation of the symptoms of AD and offers suggestions on ways to assist AD patients and their caregivers in a waiting room setting. The module covers behavior and communication problems that may arise and demonstrates effective methods of coping with them in an office setting. Caregivers of AD patients offer insightful suggestions on ways that doctors can interact more positively with AD patients and ways to arrange appointment settings that are appropriate for patients and their caregivers.

Module II discusses the initial reaction of caregivers to the signs of early Alzheimer’s disease as well as the stages of AD which range from forgetfulness to personality changes, lack of verbal communication, bizarre behavior and ultimately the inability to carry out the basic tasks of daily living. The video offers explanations by physicians and suggestions on how to deal with the changing needs of Alzheimer’s patients, including safety concerns, loss of sequence in tasks and impaired judgment.

As this fast-paced video points out, persons with intellectual disabilities resulting from developmental disabilities, stroke, and neurological conditions are more likely to develop dementia and at earlier ages than the general population. This is particularly true for persons with Down’s syndrome who are uniquely at risk for dementia. It is therefore important to alert staff of group homes and others who care for the intellectually challenged to be alert to the possibility of Alzheimer’s disease as this population ages. Staff of a group home discuss the importance of measuring the intellectual and general functioning of the intellectually challenged at age forty so that they will have a baseline for comparison as residents grow older.

The video provides information about web sites where helpful information for diagnosing and caring for those with dementia is available. Persons who work with the intellectually challenged stress the importance of constantly stimulating those with dementia so that they can function optimally for as long as possible. They note that continued stimulation and efforts to support independence are needed or the resident will decline faster than he or she otherwise would.

The video discusses the stages of dementia, the importance of educating staff about the signs of dementia and offers suggestions for nhancing the independence of residents with dementia so that they can avoid institutionalization for as long as possible. Sensory and memory stimulation are important parts of keeping patients as active as possible. Ways to enhance these include open common areas so that residents are aware of what is going on in the various activity rooms, personalizing the patients’ rooms, ensuring that there are no barriers to mobility, and personalizing activities so that they are challenging yet achievable for the individual. The staff stress that we all need love, care and respect and the importance of developing individual care management plans and activities that meet the needs of the both the group and the individuals within it.

Physicians (2 hours CME), Nurses, Social Workers

Description
This video stresses the sensitivity that is needed in providing information and services to AD patients in various ethnic communities. The video provides scenes of in-home assessments and outreach services. While it does not touch on specific problems in reaching out to AD patients who are members of minority ethnic groups, it does emphasize that special problems can be encountered.

General Public

: Caregivers, Families, and Health Professionals

Families, caregivers, and general public

Caregivers, families, and health professionals

Description
Home Is Where I Remember Things provides an insightful discussion through personal vignettes of what daily life is like for those who have dementia and their caregivers. The video provides scenes of a son and his father during a typical day together. The vignette underscores the many tasks the son must undertake in caring for his father from fixing meals to getting him dressed and bathed, as well as the good times they enjoy together. The son relates the challenges he has encountered including financial difficulties and the conflicts that arise in trying to work and care for his father.

Another vignette shows a hired caregiver and the elderly woman for whom she cares. In a third vignette a wife talks about her husband and how Alzheimer’s disease has affected their lives and their relationship. She discusses the impact that AD has had on her as her husband has lost his ability to communicate and the frustrations she has encountered in trying to keep him safe as he attempts to wander. She also discusses the importance of respite care and her support group in helping her cope with the many challenges of caregiving.

This narrated video discusses the Native Americans’ view of Alzheimer’s disease and related dementias. The narrator points out that AD is not considered in a negative light bur rather as a normal situation that sometimes occurs, as one grows older. The video includes a discussion of the problems that accompany AD and its effects on caregivers. It also includes vignettes of Native Americans caregivers and their relatives. The video offers ideas and suggestions on how to deal with problems and provides information about the Alzheimer’s Association and the National Eldercare Locator.

Created: 1995
Format: Video
Purpose: Specialized education
Targeted Cultural Group: Native Americans
Author/Producer: Montana Alzheimer’s Demonstration Project, Ann O. Johnson, Ed.D, Executive Producer. Video Visions Productions, Bozeman, MT.
Cost: Single copies free
Contact Source: Montana Office on Aging
Phone numbers: (406) 444-4077
Audience: Service providers, caregivers, and support groups

Service providers and health professionals

Health professionals, families, and general public