An Alzheimer's disease resource for Alaskans

A conversation with Kay Papakristo, Alzheimer's Resource of Alaska Education Director

Kay, tell us first about the mission of Alzheimer's Resource of Alaska?

ARA's mission is to support Alaskans affected by Alzheimer's disease, related dementias and other disabilities to ensure quality of life. Aging is something that impacts everyone and brings its own challenges; however, Alzheimer's disease and related dementias (ADRD) are not a part of 'normal' aging and the impact to all effected by ADRD is significant. Our goal at ARA is to provide support to all those impacted by ADRD, including family and professional caregivers, through services such as: consultation, referrals to community resources, coaching, education and training, support groups, care coordination, etc.

As Education Director, my role is to manage the grants that the Education Department, support our Education Specialists as they provide education and supports, and work with community partners to enhance and expand services.

My understanding is that ARA provides services not only for those experiencing memory loss and dementia, but also for the family caregivers who assist them. Can you tell me more about your caregiver support programs?

Yes! ARA offers supports and services for those living with Alzheimer's disease or related dementia (ADRD), as well as for family or friends of loved ones living with ADRD. We offer a variety of classes specifically for these informal caregivers, including single classes, trainings, and educational series. ARA has a variety of regular support groups for care partners of loved ones living with dementia, such as: drop-in groups for anytime a little extra support is needed; ongoing education & support groups where you learn with and receive support from peers; and specialized groups to address topics that may not be applicable to all caregivers, like our intimate partners group.

In addition, ARA provides consultations to families of loved ones living with dementia to help identify needs and provide resources. We offer coaching for when a caregiver encounters an issue and needs professional support or guidance. ARA also facilitates the Mini-Grant program for individuals with a diagnosis of some form of dementia. This grant can assist caregivers in obtaining necessary resources for their loved one living with dementia.

Currently, in Anchorage only, we are partnered with the state of Alaska to administer the Caregiver Connection Program, a pilot program designed to provide support and relief to primary family caregivers who experience significant burden due to their caregiving responsibilities. Qualified family caregivers will receive an assessment to help pinpoint areas of greatest burden. Based on the assessment and follow up consultations, the caregiver will receive a limited service plan that provides access to supports and services within the community intended to help relieve some of their burden.

What are the biggest challenges your clients face when they come to ARA? How do you address those as they go through the intake process?

While each caregiver's journey is unique, there are definitely some challenges that seem to affect most. One challenge is just knowing where to turn or what resources are out there. Another significant challenge is finding the time to work on all of these things when you are a fulltime caregiver for your loved one.

Through our intake process, we talk with the client to pinpoint their initial purpose for calling and to identify areas where ARA can provide support, guidance, resources, and referrals. Intake calls are often followed up by longer consultations where situations and needs can be reviewed more thoroughly, and the Education Specialist can offer detailed information on classes and supports.

In addition to working with families impacted by Alzheimer's and related memory loss issues, ARA also educates service providers statewide to build a strong corps of professional caregivers. Tell us more about that work and its impact across Alaska.

In the event that the care needs of an individual living with dementia become too great or family members are unavailable to aid in their care, professional caregivers become involved. In-home respite, senior day programs, assisted living homes and nursing homes all employ professionals to work with these individuals. Professionals also deal with the difficult physical, emotional and behavioral issues brought on by ADRD, and this is often without the care recipients' personal histories which would be helpful in performing their daily duties. Professionals often deal with aggressive or combative behaviors, or struggle with the refusal of care. Without proper supervision or mentoring, direct workers may develop poor skills or attempt techniques not well suited on an individual with ADRD. In these demanding positions the rate of turnover is high. A frequent, revolving population of new staff ultimately has a negative effect on the individual, for whom continuity in trusted caregivers improves wellbeing.

Professional education and training for providers is essential to increase their skills in dementia-specific care, and may result in staying in the position longer. The need for trained workforce will continue to grow as Alaska's senior population grows. Ensuring these workers are well-trained and have strong tools to care for individuals with ADRD is essential. ARA also provides consultation and coaching for professionals to ensure they have well rounded support. The overall impact to Alaska is that we have more skilled dementia care workers and ultimately people living with dementia and their families receive better care and have an improved quality of life.

For over five years, ARA has partnered with the Positive Approach to Care™ (PAC) organization in an effort to bring strength-based dementia care to Alaska. PAC™ is an approach aimed at changing the culture of dementia care and decreasing the stigma around dementia through positive, educational training. PAC™ principals serve all people connected to those living with brain change and dementia. The PAC™ person-centered approach meets the complex and unique needs of individuals living with dementia, using effective and structured techniques. The PAC™ approach allows us to grow appreciation of differences that will lead to better care and support of those living with changing cognitive abilities across the State of Alaska.

I hear that ARA is running some innovative new programs to support brain health and address social isolation for clients. What can you tell us about those?

Yes! We are in the works to launch our new Mind Aerobics™ programs, which are designed to help strengthen and support brain health. Mind Aerobics™ is a fun, evidence-based, award winning suite of programs designed to provide older adults with comprehensive mental workouts that can help maintain cognitive functioning or slow cognitive decline. A secondary benefit of these programs is that participants report feeling less isolated and less depression. The Mind Aerobics™ classes are organized by cognitive level and participants are grouped into classes based on their cognitive function. This summer, ARA will launch the Mind Sharpener™ program, which targets individuals who have no impairment or very mild cognitive decline, often referred to as the worried well. Later in the summer, ARA will launch the second program in the series, Mind Works, which is for those in the early to moderate stage of dementia. Participants are screened to ensure they are in the right program. Both of these programs have been adapted to online formats, and each session meets for 1 hour, two times per week, for a total of 12 weeks. Keep an eye out for these exciting new Mind Aerobics™ programs!

I know ARA wants services to be accessible, regardless of income. How do you do that?

ARA is the recipient of several grants from the State of Alaska, the Alaska Mental Health Trust Authority, the MatSu Healthy Foundation and other local organizations. We also depend on the generosity of our donors, which often includes families we serve. It is our belief that people affected by ADRD should be able to access all services without regard to financial status; these grants and donations allow us to offer no fixed charges for individuals or families.

How can folks at home learn more and request services for themselves and their loved ones?

There are several different ways. Check out our webpage ( www. Alzalaska.org ) to learn more about our agency's history, mission, and our current offerings and events. Call to talk with one of our highly trained staff, all of whom are more than happy to answer any questions or concerns, 907-561-3313.

Is there anything we didn't cover that you'd like Alaskans to know about ARA? Thanks for your time.

Yes, ARA's Comfort Pet project! Alzheimer's Resource of Alaska is distributing robotic comfort pets to improve quality of life for people living with Alzheimer's disease and related dementias by reducing social isolation. Robotic comfort pets offer the benefits of a live pet without the additional responsibility and risks associated with a live animal. Research has shown that robotic pets can decrease anxiety for people living with dementia as well as ease caregiver stress.

For more information about our Comfort Pets, Caregiver Connection, Mind Aerobics™ program, Care Coordination or Education supports, please call 907-561-3313. Go to our website at http://www.alzalaska.org for our calendar of ARA classes and events happening around the state.

 
 
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