Gaileen Sutton

Caring for a family member inflicted with symptoms of Alzheimer’s disease is both debilitating and a challenging task. Each day brings new demands as the caregiver copes with the rapid progression of the new patterns of behavior of the Alzheimer’s patient.

In preparing and setting up an effective home care for an Alzheimer’s patient, a compassionate caregiver must make the following changes in a new home environment:

1. As the disease progresses, adjusting your communication style to the patient’s changing needs.

2. Scheduling visitors to avoid surprises and have something to look forward to. Even if the elder with dementia does not recognize those who visit, the contact is nonetheless valuable for them.

3. Establishing routines in activities of daily living. Be accepting of the increasingly limited capabilities of the person with dementia and implement care strategies accordingly. Do your best to be patient, kind, flexible, supportive, and calm. This disease is no one’s fault, although it is very aggravating and disappointing.

By the same token, don’t take problem behaviors (like aggressiveness or wandering) personally. Accept the symptoms of the disease and proceed from there. Remember that the person is not behaving this way on purpose.

Plan activities that the patient is interested in, such as art, cooking, walking, swimming, or gardening. Focus on enjoyment, not achievement. If the person is lucid enough, involve them in making music, doing puzzles or crosswords, or playing memory games, card or board games. Or, the patient may passively enjoy hearing music, contact with pets, or sitting outside in the garden.

Go for walks in the neighborhood, go for a drive, or spend time at a park. Walking is often therapeutic, although the pace may not be as vigorous as you might like. Develop a style of paying more attention to the beauty and novelty of your surroundings as you walk.

4. Maintaining social contacts and fun. During the early stage of the disease, caregivers can promote the patient’s sense of well being by providing emotional support and by helping to maintain familiar activities and social contacts.

Even when Alzheimer’s patients no longer have the cognitive ability to understand your humor, they can still appreciate it. They may still smile or laugh and sharing that laughter can be a relief to both you and your charge. Use the same modes of humor as you always have: teasing, nonsense, clowning. Be even more silly than usual!

To counteract isolation and loneliness, encourage family and friends to stay involved. Take the patient to family gatherings if it’s comfortable to do so. Schedule visitors, to avoid surprises and have something to look forward to. Even if the elder with dementia does not recognize those who visit, the contact is nonetheless valuable for them.

Sometimes the caregiver will want to join the patient in family gatherings or stay in the home when visitors are present. Caregivers can start feeling isolated and lonely themselves as more and more of their time is built around the elder’s needs. If the patient feels safe with the visitors, the caregiver can use the visiting time as an opportunity for relief and respite. Adult day care has similar benefits: social stimulation for the patient and free time for the caregiver.

5. Promote comfort and safety. As problems with memory and judgment increase, the patient becomes more vulnerable to accidents and injuries. There will be times when you’ll want to remind the person that they have Alzheimer’s. At other times it might be better to refer to a “memory problem.” Even if you repeatedly tell the elder that they have Alzheimer’s disease, they may not remember that you told them. Be prepared to patiently repeat the information at times when you’re trying to help the person understand why they can’t do something or why you are taking over a task the person used to do.

Carefully screened and compassionate caregivers regard their responsibility as a way of being involved with their loved one. Their caring is based on unconditional love, and they do not consider it a burden. Dementia patients are able to read body language and to respond to the positive attitudes of the caregiver. Where patient and caregiver have had problems in their past relationship, it can be especially challenging to empathize and be kind, so a support system for the caregiver is most important.

6. Communicate with an Alzheimer’s patient. A good home care service trains caregivers to acknowledge requests and respond to these patients. Don’t argue or try to change the person’s mind, even if you believe the request is irrational. Be affectionate with the patient, if this feels natural. Try not to set up a cycle of paying attention only when the person displays problem behaviors. Break this negative cycle by being supportive of positive behavior.

Jack Haddad, MD, MBA
Portfolio Manager
MD Capital Management
Affiliated Hospitals
Sutter-Roseville Medical Center, Roseville, CA
San Francisco General Hospital, San Francisco, CA
San Jose Orthopedic Medical Group, San Jose, CA
Highland Hospital, Oakland, CA

Dr. Jack Haddad, MD, MBA is the founder and owner of King of Home Care, an independently owned non-medical In-home care agency. In addition to his compassion and dedication to the home care industry, Dr. Haddad’s expertise and knowledge with In-Home Care is evident by the clinical research trials that he has conducted over the years.

Researches from Germany conducted a study to evaluate the significance of home care patients suffering from advanced cancer. Results were published in Med Klin, 15;95(3): 136-42.

Analysis of the study was derived from interviews with relatives of patients with terminal cancer diseases. They had participated in the home care of 50 consecutively treated patients 2 years previously.

The value of home care was evaluated on the basis of the personal experience of those concerned. Data showed that the holistic concept of palliative home care could be implemented by a specialized team at a high quality level.

Under the favorable conditions of the familiar surroundings, an atmosphere of trust developed as a result of the cooperation with the family members, people close to the patients and with family doctors. It contributed to a relatively high quality of life and to alleviate the emotional stress. Most of those involved were able to accept the hand of fate. On this basis, the terminal phase could be satisfactorily arranged and preparations made for a good quality of death.

During the home care, appreciation of the value of the family increased. The intensified family relations were mostly sustained after the patient’s death. The results document the great personal importance of home care for patients, their caretakers and families. The positive experience and the awareness of having contributed substantially to coping with the life crisis made it easier for the bereaved to grieve and to rearrange their life. Stepwise discriminant analysis was performed using admission, discharge, and combined variables. In our final model of the predictors of discharge disposition, the use of admission functional variables, age, and sex correctly classified 100% of the NH group and 91% of the other group, with IADL, ADL, and mobility defining the function that discriminated the groups.

In conclusion, other studies have been conducted on predictors of bereavement outcomes in family caregivers of persons who have died of cancer. The literature has been divided into common themes of predictors: characteristics of the deceased person, characteristics of the bereaved person, comparisons of bereaved and non-bereaved persons, well-being of the bereaved person prior to the death, prior interpersonal relationships, characteristics of the illness, characteristics of the caregiving experience, and characteristics of terminal care.

A number of recurring patterns point the way to identifying persons who may be at increased risk for poor adjustment during bereavement. It is apparent that men and women express their grief somewhat differently. Whether men or women are at greater risk for poor adjustment, however, remains to be determined.

There is some empirical evidence to suggest that lower socioeconomic status and linguistic barriers interfere with adjustment during bereavement. There is a dearth of culturally relevant services to help palliative-care patients and their family members make the required adjustments. The literature makes apparent the need for open awareness of the impending death and for careful and thoughtful planning for where and how the death ought to occur.

The regular and frequent presence of professional caregivers contributes to family caregivers’ satisfaction with care. Discrepant findings point to the need to explore the issues that underline them. Older bereaved caregivers appear to have some advantages over younger ones, but this finding is not universally found in the results of these studies. Methodological problems include small sample sizes and large variations in the particular bereavement outcomes studied.

Jack Haddad, MD, MBA Portfolio Manager MD Capital Management

Affiliated Hospitals Sutter-Roseville Medical Center, Roseville, CA San Francisco General Hospital, San Francisco, CA San Jose Orthopedic Medical Group, San Jose, CA Highland Hospital, Oakland, CA

Dr. Jack Haddad, MD, MBA is the founder and owner of King of Home Care, an independently owned non-medical In-home care agency. In addition to his compassion and dedication to the home care industry, Dr. Haddad’s expertise and knowledge in hospice care is evident by the clinical research trials that he has conducted over the years.