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Dementia Needs Assessment Report |
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Final Report
Section I: Persons with Early Memory Related Problems
Participants in the survey of persons with mild memory loss identified concerns, needs and issues. The Alzheimer's Association will use this information when developing and/or advocating for programs and services for persons with mild memory problems. The Association encourages service providers to utilize this information in their effort to provide for this target population.
Denial and Stigmas Because definitive diagnosis of Alzheimer's disease and related dementias can not be confirmed until autopsy, people with mild memory problems continually question their condition. The gradual progression of Alzheimer's disease encourages denial among this population, even among those who have obtained a probable diagnosis. The survey participants were seeking alternative explanations for their condition and did not want to be labeled as having Alzheimer's disease. Fear and denial seem to delay many people from seeking diagnosis. Concerns Loss of personal independence was a primary concern of participants. They expressed fear about their memory loss becoming more severe and reducing their independence. Nearly 50% of surveyed persons indicated that they occasionally lose their way while traveling locally; never the less, 75% continued to drive. All participants were concerned about staying in contact and maintaining personal relationships with family members and friends. They were particularly worried about how memory loss would impact their family and loved ones as their illness progressed. They were troubled about the impact on the physical health and financial condition of the their family. Persons who responded to the surveys, and particularly those in the focus groups, agonized over these issues. Frustration and Embarrassment Persons with mild memory problems experience a great deal of frustration due to the lessening of functional abilities. They are aggravated by their inability to manage activities as they have in the past, and are frustrated because they feel unable to cope. This deterioration of abilities also causes embarrassment and self imposed isolation from the community, avoiding situations where others might become aware of their condition. Program and Service Preferences Needs assessment participants relied on memory strategies and support mechanisms to help manage their memory loss. They developed routines that allowed them to function at home and in the community. There was an expressed need for programs that assist with organization, memory strategies and recall. The mild memory impaired population preferred programs and services that are intermingled with social, recreational or religious activities. They may find these settings less threatening. They also expressed a need for information on diseases that cause memory loss, information about financial issues, accessing community services and the long-term care system, and counseling to determine future needs. All of these services are available, but many of the participants were not aware of them, or how to access them. Alzheimer's Association More then one-third of the early memory loss participants were unaware of the existence of the Alzheimer's Association until being contacted through the needs assessment project. Another third, who were familiar with the association, had not made contact. This fact, combined with their expressed desire for information about causes of memory loss, information about financial issues, accessing the long-term care system and counseling to determine what is needed in the future, negatively impacts their ability to access existing community resources and information. Needs Although participants indicated minimal need for help with activities of daily living, they did indicate an interest in receiving:
Alzheimer's Association Recommendations Perhaps the most important message from this research is that many needs that exist for persons with early memory loss are interwoven. Denial, lack of awareness of appropriate programs, concerns about family and social independence are interconnected to the willingness and opportunity of the person with early memory loss to seek a probable diagnosis of dementia. Pursuing this diagnosis will open the door to many support programs and services. The following recommendations address these concerns: Enhanced Community Awareness To better assist the person with a memory-related illness, the long-term care community must develop programs to expand awareness of memory related diseases. This will help persons concerned about memory loss in their efforts to seek earlier diagnosis and to become familiar with community resources. Encourage Early Diagnosis Persons with early memory loss and an accurate, early diagnosis gain a greater understanding of their situation, become educated on their memory problem and can take advantage of medical treatments (such as Aricept), and community resources. Early diagnosis helps prepare the person with memory loss and their family members for the future. They will have time to plan for the future, (e.g. driving and financial, legal and personal issues). Programs and Services Programs should be developed that provide a social outlet. These social programs should be based within local communities, affiliated with civic or religious organizations, senior centers, etc. Services should focus on the enhancement of cognitive functions and memory strategies. These services will support the memory impaired population in finding ways to cope with their changing situation and support their efforts to maintain their independence.
Participant Characteristics The survey findings are based on information gathered from 40 persons with early memory loss. Only 19% of the participants had a formal diagnosis of probable dementia. The other participants perceived they had memory problems, even though they continued to maintain their independence. The reasons for not pursuing diagnosis were numerous, but a lack of understanding of the disease, the gradual progression and denial play major roles. Approximately 93% of the participants were Caucasian and above age 71 years. The majority of those surveyed were generally in good health. The respondents had a high level of education, with 93% completing college and/or holding advanced degrees. Fifty-eight percent of those surveyed were female. More than 50% of the participants were currently working or volunteering, with 32% actively engaged up to 20 hours per week. Fifty-eight percent of the participants are married or living with a partner; 42% lived alone. When respondents were asked a series of questions about their perceived emotional well-being, it was apparent that memory related problems contributed to the following negative effects:
On the positive side, when asked about perceived emotional well-being other responses consisted of:
The participants in the caregiver survey provided information on their needs and identified issues. The Alzheimer's Association will use this information when developing and/or advocating for programs and services to support individuals in their caregiving roles. The Association encourages service providers to utilize this information in their effort to deliver programs, services and support for this target population.
Concerns Caregivers were concerned about caring for themselves in order to continue caring for their family member. Lack of sleep was a major issue. Many caregivers also were working and caring for other family members. When providing care in the home, caregivers are "on duty" throughout the night if needed. The emotional strains of caregiving contribute to the exhaustion of caregivers. They not only try to keep themselves emotionally stable, but they also try to keep the emotional tone of the household in balance. Another concern expressed was the lack of time for ones self and managing other responsibilities, such as cleaning, finances and shopping. There are fee-for-service programs, such as respite or in-home care available to support family caregivers, but cost is a barrier. Services delivered within the home also seem to be underutilized because family members do not seem to be comfortable leaving their loved one alone with a stranger. The emotional connection that is developed when one provides care can be a barrier to caregivers seeking services. Program and Service Preferences Caregivers had different needs for programs and services, depending on their care recipient's level of dementia, the length of time they had been providing care and their understanding of available support systems. The survey participants were more interested in support for normal household chores and responsibilities, rather than assistance with providing care. For many, their caregiving role is the most important responsibility and they find it difficult to ask for support. The most utilized information sources for Alzheimer's disease and other related dementia information were: the Alzheimer's Association, books, pamphlets and physicians. The services most utilized by survey respondents were: home health/personal care services, nursing care, adult day services, legal/financial services and support groups. The time and location of programs and services clearly was important to caregivers, who stated that weekdays and weekends, during the daytime hours were most valued. Caregivers of persons with middle to advanced stages of dementia, viewed support groups in a very positive light, both for sharing experiences and as a social outlet. Alternatively, those caring for persons in the early to mild stages of dementia were less inclined to participate in support groups which included caregivers coping with advanced stages of dementia. Early stage caregivers found these groups intimidating, because they were not ready emotionally to hear about what to expect in the future. Caregivers emphasized that support groups' success was dependent upon a strong facilitator and indicated the importance of a personal relationship with the facilitator. Family Issues Eighty percent of surveyed caregivers expressed the need for programs and services to support the following family issues:
Alzheimer's Association Seventy-six percent of participants have utilized the Alzheimer's Association's programs and services. The primary reasons for contact were: to acquire information on Alzheimer's disease, to learn more about providing care and to talk to others with similar problems. When asked at what point in time should people contact the association, 60% said, at the first signs of memory impairment. Upon initial contact, the Chapter was perceived as a source for information, not a source for actual programs and services. Forty percent indicated a preference for initial contact for services was by telephone. Many participants stated that they did not know of the Alzheimer's Association until their family member received a diagnosis.
Alzheimer's Association Recommendations The survey demonstrates the need for a broader scope of support for caregivers. Many caregivers receive little or no help on a daily basis from systems put in place to aid aging people in our society. Health care systems are designed on a medical model to respond to the needs of acute care situations and not long term progressing illnesses. People providing care to those with memory related illnesses require multifaceted long-term support involving many aspects of the community. Increased Community Awareness Programs need to be developed that inform the community of the dilemma faced by caregivers day-to- day. Caregivers can benefit from the support of employers, co-workers, religious communities, social service agencies and community organizations. Many of these resources are willing to assist families, but are not aware of the type of help that is required. Enhanced community awareness concerning the plight of the caregiver, may encourage the involvement and support of local community resources. Family Support and Counseling Programs must be developed to include the active involvement of the entire family. These programs should focus on the enhanced knowledge and understanding of memory related illnesses and the many roles of the caregiver. Families may need counseling and education on communication, positive family participation and appropriate decision making processes. Programs and Services Programs should be designed to meet the needs of people providing care at different stages of the disease. Programs are needed to sustain the caregivers emotional stability. Mutual aid support programs have been successful in meeting this need and providing opportunities to enhance coping strategies and caregiving skills. Caregivers also use peer-to-peer activities as support mechanisms and social outlets. Programs should be scheduled for both weekdays and weekends and held primarily during the daytime hours. Caregiver Counseling and Education Programs for caregivers should focus on how to:
Alzheimer's Association An awareness and education campaign targeting the programs and services of the Alzheimer's Association will provide information that may encourage early contact with caregivers. Early contact will provide access to appropriate referrals to community resources, counseling, planning, education and emotional support. The hours of telephone support services provided by the Association should be extended to address the schedule and time constraints of the caregiver.
Participant Characteristics The survey findings are based on information gathered from 291 caregivers, caring for persons with mild, moderate or severe memory loss. Forty-seven percent of surveyed caregivers had been providing care for three years or less, with 50% providing care in the home. Ninety-one percent of participants' family members had been diagnosed with dementia, 66% of those with Alzheimer's disease. Approximately 94% of the caregivers were Caucasian and their ages ranged from 26 to 88, with an average age of 59. The respondents had a high level of education, with 79% completing college and/or holding advanced degrees. Females made up 76% of the caregivers surveyed, while 66% of the care recipients also were female. Sixty-three percent of the caregivers were currently working or volunteering; 13% had retired or quit work due to their caregiving responsibilities. More than 50% of respondents were adult children caring for aging parents. Thirty-four percent of caregivers were elderly persons caring for a spouse with memory related problems. Seventy-six percent of the caregivers were married or living with a partner. The care recipients' gross annual income, including all amounts supplemented by other friends or family contributions were:
Close to 60% of the caregivers could not leave their care recipient alone for more than an hour because of concerns about emergency situations, help with feeding and probable accidents. Thirty-seven percent of care recipients could not be left alone at all. When respondents were asked a series of questions about their perceived emotional well-being, caregiving contributed to the following negative results:
Positive findings, when asked about perceived emotional well-being, were:
The first session of the Advisory Committee determined that the most effective system of securing willing participants for the written survey and focus group sessions was through a pre-survey questionnaire. The Committee also determined that it was important to gather general demographic information in the questionnaire.
The second meeting of the Advisory Committee was used to solicit best resources for reaching the project's target population. Suggestions from that session formed the core distribution list (see Distribution List attached). Following this session, calls were placed by a project coordinator to each of the Advisory Committee members to coordinate distribution through their resource channels, and further solicit suggestions. All the staff at the Alzheimer's Association also contributed ideas, suggestions, and contacts for strong distribution resources. It was decided that a personal call or visit to all the targeted independent living, assisted living, and large nursing home communities was the most effective way to reach individuals living in those communities. The list was divided up among five staff members, a project coordinator, and a volunteer. There was not a standardized approach used. Therefore, some facilities were visited in person, other facilities received a phone call, and a small number of independent living facilities only received the information in the mail because no one could be reached. The corporate office of Sunrise Assisted Living included the questionnaire in their monthly billing to their homes in the Northern Virginia area. Other long term care companies were similarly contacted, but were not willing to distribute the questionnaire via residential billing. Of note, the only member of the Advisory Committee that took a role/interest in distributing the questionnaire was Mr. Becker. While other members had stronger network connections, there was not a sense of investment in the project - merely an advisory role.
Three separate written surveys were developed - one for the individuals themselves who had memory problems, another for caregivers of individuals with dementia, and lastly for former caregivers of individuals with dementia. The surveys for current caregivers were separately coded for individuals with mild, moderate, and severe dementia. There were five total categories. The questionnaire asked the respondents to qualify themselves and the stage of care. Therefore, each respondent received the specific survey for their situation. Each survey was coded with a respondent number to indicate which of the five caregiving categories they were in, and an individual number to track who had responded. For example, #12034 would be the 34th caregiver on the "Moderate Caregiver" list. The surveys were mailed out the first week of July, 1998. Each response was noted in the master file. Everyone who had not responded by the third week received a telephone call reminding them about the survey. The remaining outstanding respondents received another follow up call two weeks later.
The participants for the focus group sessions were also culled from the pre-survey questionnaire. The project coordinators decided to make each focus group as homogeneous as possible. Therefore, groups were set up for each specific caregiving category (individuals, caregivers of mild/moderate/severe, and former caregivers). Within each category, the groups were further defined - caring for spouse or caring for parent - and by caring for them at home or in a long term care facility. Because of the specificity of each group, it was not possible to further break each group out geographically. Originally, it was decided to hold the sessions throughout the Northern Virginia area. It was very difficult getting a minimum of four participants to any given session, so it was decided to choose a location that was centrally located instead.
Each potential focus group participant was screened for: status of current situation, and availability and interest to participate in a focus group. Once a participant passed the initial screening process, a more detailed description of the project and session was explained. Most of the participants received at least two calls to coordinate the screening and logistical aspects of setting up the groups. The process was initiated approximately two weeks before the desired time of each session. Each participant received a confirmation letter one week prior to the session. All of the individuals with memory problems also received a phone call the day before their session.
All of the focus groups were held at Centex Life Solutions in Falls Church, VA. They were well located, had excellent parking and meeting space, and was an interesting store for participants to visit. Each session lasted approximately one and one half-hours. All of the participants received a gift as a token of our appreciation. A small number of potential participants were excluded from the focus group because of transportation issues. Also, the availability of caregivers to attend a session at any time of the day or week became smaller as their caregiving duties increased. Therefore, it was very difficult to find caregivers of individuals with late-stage or severe dementia able to attend the focus group sessions.
Caregivers and persons with mild memory loss have many similar needs. Both groups need access to community resources early in the disease. The primary reasons for not accessing services early are lack of awareness about services and denial of the problem. The findings of this needs assessment validated many assumptions that the Alzheimer's Association had about the needs and concerns of caregivers and persons with memory loss. Based on the responses of participants, many of the services they need currently exist in our community. The challenge is to provide sufficient awareness and education to facilitate early access. For those programs that do not exist, the Alzheimer's Association will promote, advocate for and develop the services to meet the needs of this population. The Alzheimer's Association and the aging health and social services networks within Northern Virginia should escalate efforts to deliver services, develop new programs and enhance the awareness of Alzheimer's disease and related memory disorders.
Last updated: April 23, 1999
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