NDSU Department of Child Development and Family Science
North Dakota Department of Human Services
December 1999
Michele Breen
Project Coordinator
North Dakota Alzheimer's Association
345 Schnell Drive
Oxbow, ND 58045
mlsbreen@aol.com
The North Dakota Alzheimer's Association is a not-for profit organization directly affiliated with the National Alzheimer's Association.
The association's mission — "to find a cure for Alzheimer's disease while providing support and help to Alzheimer's victims and their family caregivers"— guides it's activities and programs.
The association serves the general population of North Dakota as well as Clay county and East Grand Forks, Minnesota.
The North Dakota Alzheimer's Association was formed in October of 1997, when the formerly
volunteer run Eastern and Western Chapters merged, under the guidance of the National
Alzheimer's Association. At that time an executive director was named (the first paid
employee of the newly formed North Dakota Alzheimer's Association) and the business of
assisting families and victims of Alzheimer' s disease in the state continued with a new
approach. Board members were named from the four quadrants of the state, with equal
representation of two members per quadrant. These board members are the individuals who
work with the executive director to educate and assist both caregivers and professionals
throughout North Dakota. Several new pilot projects were undertaken: the Annual
Alzheimer's and Geriatric Conference, statewide Memory Walks and many other exciting and
innovative approaches to educating our state emerged.
In July of 1990 the North Dakota Task Force on Alzheimer's Disease and Related Dementias estimated that approximately 6,000 adults in North Dakota were affected by Alzheimer's disease. Professionals in the long-term care industry throughout North Dakota, and others who deal with the elderly population, say repeatedly that the numbers appear to be much higher now. Some nursing homes estimate that as many as 60% of their residents suffer from some type of memory impairment, and more and more of them exhibit signs of Alzheimer's disease. A result of these statistics has been an increasing number of memory care facilities, new construction of assisted living centers specializing in such care, and the conversion of long-term care beds to special care units.
Alzheimer's disease is a progressive neurological disease which causes gradual, irreversible changes in the brain cells. These changes usually involve difficulties with memory, decision-making daily activities and communications, both in understanding what others are saying and speech itself. The gradual decline in victims abilities, as well as the lack of an easy-access test for the disease, are two of the reasons that many individuals and their families are so devastated when they are faced with this "probable" diagnosis. Many people are able to cover their memory loss and appear to be able to do day-to-day tasks, often until a crisis occurs.
Nationally, Alzheimer's disease is the fourth leading cause of death in adults and affects approximately four million Americans. The "trickle-down" effects are astonishing, and the costs of care are staggering. Information supplied by the National Alzheimer's Association puts costs of care at approximately $100 billion a year; over $80 billion of that is paid for by families and caregivers. A survey done on a state-by-state basis by the Association determined that an estimated 62,000 North Dakotans spent over 57 million hours and $469 million providing informal caregiving in 1997.
The entire family suffers from this disease, not just the victims themselves. Spouses, siblings and children are all affected as the victim's judgment and daily living skills deteriorate An immense burden is placed upon family members many of them raising their own children as well as caring for an elderly parent, as they try to maintain victim's ability to remain living on their own. In addition to the costs that families incur, American businesses spend more than $33 billion annually — $26 billion is attributed to lost productivity of the caregivers plus about $7 billion related to costs for health and long-term care.
Outside service providers, both from the private sector and the state, are crucial in helping victims stay in their homes as long as they are safe to do so. But where do families find these services, especially as many adult children no longer live in our state? Many have moved out of the rural areas into more populated areas and are providing "long-distance" care for their parents. The search for services in sparsely populated areas can be daunting and time consuming. The search for services and care in the larger cities can be an endless string of phone calls and referrals. This is why the North Dakota Alzheimer's Association has undertaken a project that will be the solution to this problem for many families. The project, a comprehensive community assessment, will identify all the services available in the state that are of assistance to families dealing with this disease.
In November 1998, the Dakota Medical Foundation of Fargo, North Dakota, honored the North Dakota Alzheimer's Association with an $85,000 grant to complete a two-year project that will result in an Alzheimer's Disease Resource Guide. The project began in February of 1999 with the hiring of a project coordinator. It moved quickly forward with the selection of nine advisory board members, from four quadrants within. The state, and from various disciplines. The advisory board is made up of volunteer professionals and caregivers from the following areas: support group facilitator, home, health nurse, family practice physician, clergy member, family caregiver, aging services, long term care, assisted living, and the legal/financial field. This diverse group brought many different aspects of care and service needs to the project. The advisory board was instrumental in refining a provider survey that will be sent to service providers in the state and a caregiver survey that will be distributed to families affected by the disease.
The final survey product will be mailed to a wide variety of service providers late this fall. This data base was compiled with help from many agencies and individuals. The final result should provide information on every service in every county in North Dakota. The resulting information will be compiled into the Alzheimer's Disease Resource Guide which will be distributed to professionals and families free of charge. This will be of immense assistance to a family member in Minot, for example, who is looking for home-health, meal service, or perhaps respite care for a loved one in Wahpeton, with a minimum of effort and frustration.
The caregiver survey will be distributed throughout the state in a variety of ways. Members of the ND Alzheimer's Association will be asked to participate. The sixteen Support Groups that are affiliated with the ND Association will be called upon to complete the surveys, as well as participate in focus groups. We are asking clergy members in the state to provide surveys to members of their congregation who may be facing this disease. Long-term care facilities, family physicians, and medical centers will also be asked to distribute surveys to affected families. Finally, the association is looking for volunteers to participate from around the state.
The purpose of the caregiver survey is to find out what services are lacking for these families and what would make it easier for them to deal with Alzheimer's. Are the services available but cost-prohibitive? Is transportation an issue? What barriers are families facing? Are the solutions to these challenges too far and far between? These are all questions the association would like answered. The final results of the caregiver survey will be discussed at the Annual Alzheimer's and Geriatric Conference, and the recommendations of the advisory board will be forwarded to appropriate agencies.
In addition to the resource guide project, the Association is Involved with several other projects. In January of 1999 the Board members presented "Alzheimer's 101" seminars in Grand Forks, Hillsboro, Minot, Dickinson and Bismarck. The same curriculum was presented to over 100 family members and professionals on a single day and was well received on a statewide level. Two pilot projects were held in Bismarck. A caregiver's conference was hosted and over 70 caregivers attended. It is hoped that the conference will expand throughout the state next year. Secondly, a memory screening was held in conjunction with St. Alexius Medical Center and MedCenter One. Approximately 50 individuals participated in the screening. The association plans on expanding screenings throughout the state to help early identification of Alzheimer's disease. In an effort to aid established Alzheimer's support groups, the association has initiated a statewide effort to provide support groups with new materials and direct training for support group facilitators. Finally, the association hosted a statewide geriatric conference in Bismarck November 2 and 3. Featured speakers include Michael Splaine and Liz Kendall from the National Alzheimer's Association.
Memory Walk '99 occurred throughout North Dakota in September of this year. Cities hosting the event this year included Grand Forks, Minot, Dickinson, Bismarck, Fargo and Jamestown. This is the only fundraiser that the association holds each year. It is a fun family-oriented event that raises awareness of this disease and brings to light the extent of Alzheimer's and its effects on North Dakota.
For more information on the North Dakota Alzheimer's Association, the Resource Guide or Memory Walk 2000, contact Michelle Breen, Project Coordinator at 701-588-4662.
| Home |
NDSU Department of Child Development and Family Science
North Dakota Department of Human Services