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Posts Tagged ‘Eilon Caspi’

Fighting for Dignity: A Documentary Film

Fighting for Dignity: A Documentary Film on Injurious and Fatal Resident-to-Resident Incidents in Dementia” will show at 6 p.m. on Wednesday, April 17 in New Orleans as part of ASA’s Movie Night during the 2019 Aging in America Conference.

The film tells the deeply personal and emotionally painful story of three families (two from Minnesota and one from South Carolina) whose loved ones were seriously harmed during these episodes. One of them was seriously injured, another died as a result, and the third was sexually assaulted by another resident. Their family members share their feelings and thoughts about these traumatic incidents and the ways in which they devastated their families.

They ask that the harm experienced by their loved ones will not be in vein and that lessons will be learned from these incidents in order to realize the human right of other vulnerable and frail elders to live in a safe care environment.

Read the Full Article Here by Eilon Caspi

Make Alzheimer’s Research History!
Join Lori La Bey April 13th

1:30pm – 3:30pm EST

12:30pm CST, 11:30am MST, 10:30am PST

Become a Citizen Scientist for 1 Hour…

Push Alzheimer’s Research Ahead by Year!

Upcoming Public Events with Lori La Bey

Schedule Your Next Event with Lori La Bey https://www.alzheimersspeaks.com/contact-us

Wednesday, April 9th – 5:00pm- 8:00pm

Educational Program – Understanding Alzheimer’s & Dementia “

Film Screening & Talk Back – “A Timeless Love”

Harmony Village at Care One – 800-272-3900

3014 No. Stanwick Road, Moorestown, NJ 08057

Wednesday, April 10th – 9:00am- 12:00pm

Educational Program

“A Day in the Life of Dementia”

United Methodist Communities at The Shores  800-272-3900

2201 Bay Ave, Ocean City, NJ  08226

Wednesday, April 10th – 5:00pm – 8:00pm

Educational Program

“A Day in the Life of Dementia”

United Methodist Communities at The Shores 800-272-3900

2201 Bay Ave, Ocean City, NJ  08226

Thursday, April 11th – 10:00am – 12:00pm

Film Screening & Talk Back

“His Neighbor Phil”

United Methodist Communities at The Shores   800-272-3900

2201 Bay Ave, Ocean City, NJ  08226

Thursday, April 11th – 6:00pm – 8:00pm

Film Screening & Talk Back

“His Neighbor Phil”

United Methodist Communities at The Shores   800-272-3900

2201 Bay Ave, Ocean City, NJ  08226

Friday, April 19th – 10:30am – 12:30pm

Educational Program

“Dementia Care Is Changing, Are You?”

Gable Pines at Vadnais Heights      651-829-3171

1260 East Co. Rd. E, Vadnais Heights, MN 55110

Friday, April 26th – 10:30am – 12:30pm

Educational Program

“Realities of Dementia – Family Friendly Tools & Tips”

Gable Pines at Vadnais Heights      651-829-3171

1260 East Co. Rd. E, Vadnais Heights, MN 55110

Friday, May 3rd – 10:30am – 12:30pm

Educational Program

“As the Cookie Crumbles”

Gable Pines at Vadnais Heights      651-829-3171

1260 East Co. Rd. E, Vadnais Heights, MN 55110

Friday, May 10th – 10:30am – 12:30pm

Film Screening & Talk Back

“A Timeless Love”

Gable Pines at Vadnais Heights      651-829-3171

1260 East Co. Rd. E, Vadnais Heights, MN 55110

Friday, May 17th  – 10:30am – 12:30pm

Educational Program 

“Shifting from Crisis to Comfort”

Gable Pines at Vadnais Heights      651-829-3171

1260 East Co. Rd. E, Vadnais Heights, MN 55110

See what LeadingAge has to say about Lori La Bey

 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge WA

For More Testimonials

Video Interviews with Those Living with Dementia

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Cure vs Care… What Are Your Thoughts on Promises Made?

Cure vs Care…

What Are Your Thoughts on

Promises Made?

This is a very interesting podcast from HealthNewsReview a leading watchdog organization dedicated to balanced health care-related journalism.  They discusses the problematic promise of a cure for Alzheimer’s disease. It features many of our friends here on Alzheimer’s Speaks:  Eilon Caspi, Bob Savage, Peter Whitehouse, Mary Radnofsky and Judy Berry to mention a few.

Click here to listen and also to get more editorial

Podcast Eilon Mary Bob and Judy on care vs curePlease let us know your thoughts by commenting, liking and sharing this article.

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Today our Dementia Chats Experts, those diagnosed and living with cognitive impairment, discuss what they would like to see their communities provide them to show they are truly a “Dementia Friendly Business or Communities.”  You will find great tips for businesses and communities to consider.

Our experts today are: Michael Ellenbogen, Laurie Scherrer, Bob Savage and Truthful Loving Kindness. Lori La Bey, founder of Alzheimer’s Speaks facilitates the conversation. Lori can be reached at or visit Alzheimer’s Speaks website.

Voices of Those Diagnosed with Dementia

Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates. Our Experts are those diagnosed with dementia. We have been doing this series since July of 2012.

For More Dementia Chats Videos




Looking for a Keynoter, Consultant or Trainer?

See what LeadingAge has to say about Lori La Bey

 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge Washington

For More Testimonials


Click Below to Download the Tips







Push Research Forward – Join the A-List

What Matters Most: Cognitive Self Assessment


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Study of Deaths Pertaining to Dementia Resident to Resident Offers Insights to Inform Policy and Prevention

We at Alzheimer’s Speaks and Dementia Chats are so proud of Eilon Caspi’s work to improve the quality of life for those living with dementia.  This is one of his latest articles.  It is such a privilege to work with a man who is so dedicated to making a positive difference in the lives of others. Thank you Eilon.

Study of Deaths – Resident – to – Resident Incidents in Dementia

Offers Insights to Inform Policy and Prevention

Analyzing the incidents between residents in dementia in long-term care homes may hold the key to reducing future fatalities among this vulnerable population, according to new research from the University of Minnesota School of Nursing. Gathered from media accounts and death review records, the exploratory study by Eilon Caspi, PhD, is the first to examine the circumstances surrounding the death of elders as a result of resident-to-resident incidents in dementia in the United States and Canada.

Despite growing concerns about the projected growth in the number of people with dementia and the expected rise in resident-to-resident incidents, the phenomenon is not currently being tracked by the two largest federally mandated clinical and oversight systems in nursing homes in the U.S.

“The fact that we are not capturing and tracking this phenomenon represents a major missed opportunity for learning and prevention of these incidents,” says Caspi, the study’s author and a research associate at the School of Nursing. “We need to develop a data-driven national action plan to reduce these incidents and ensure that frail and vulnerable residents will remain safe in the last years of their lives. Delivery of evidence-based staff training programs to improve understanding, prevention and de-escalation of these episodes is urgently needed.”

Nearly half (44 percent) of all fatalities were the results of physical contact classified as push-fall.

While men and women equally died as a result of these incidents, three-quarters of exhibitors were men.

More than half (59 percent) of all incidents took place inside bedrooms and 43 percent involved roommates.

Evenings (44 percent) were the most common time for incidents to occur, with 38 percent of all incidents occurring on weekends. 62 percent were reportedly not witnessed by staff.

READ FULL ARTICLE and WATCH the HIGHLIGHT VIDEO

Feeling humbled and honored. #WEGOHealthAwards 

These awards seek to recognize Patient Leaders who are making an impact with their advocacy.



Looking for a Keynoter, Consultant or Trainer?

See what LeadingAge has to say about Lori La Bey

 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge Washington

For More Testimonials

 


Click Below to Download the Tips







Push Research Forward – Join the A-List

What Matters Most: Cognitive Self Assessment


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Do Experts & Care Partners Really Know What A Person With Dementia Wants?

 Dementia Chats Video –

Do Experts & Care Partners Really Know What A Person With Dementia Wants?

Welcome To Dementia Chats.
Where voices of those diagnosed with dementia are heard.

Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates. Our Experts are those diagnosed with dementia.

We have been doing this series since July of 2012, – See more here

In this video our experts living with dementia discuss their thoughts on the advise and decision making process of “Dementia Experts & Care Partners”

I think you will be surprised and interested in the insights offered by our Experts Living With Dementia:

Michael Ellenbogen
Bob Savage
Mary Howard
Harry Urban
Mary Radnofsky

I want to give a big Thank you to our Experts living with dementia for taking the time to share their perceptions, thoughts, wants and needs with us.

Brought To You By Lori La Bey, Founder of

www.AlzheimersSpeaks.com

www.alzheimersspeaks.com/dementia-chats-webinar

Facilitated By
Lori La Bey

Co Facilitated By
Eilon Caspi, Ph.D., Gerontologist and Dementia Behavior Specialist

http://dementiabehaviorconsulting.com

http://eiloncaspiabbr.tumblr.com

We Set Sail In 1 Month

Join Us!

We are honored by your response to our offering of the Dementia Friendly Symposium and Cruise and we are encouraging people to book their cabins before we are sold out!

For more details on the symposium and cruise go to https://alzheimersspeaks.com/cruise-with-us

Click here for the Symposium Program

Kathy Shoaf the travel agent handling the symposium and cruise can be reached at: 219-608-2002 or email her at Kathy.Shoaf@CruisePlanners.com

 

Learn What the City of Roseville, MN

to be Dementia Friendly

Click Below to Download the Tips

Insights from Arthur’s 

Here is One of Many Free Tips

 

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20 Reason Why Gathering Life History Is Important With Dementia

20 Reasons Why We Want to Know the Early Life History of Older People With Dementia? 

Eilon Caspi Ph.D.  

Eilon_article_20_reasons
“After everything I am doing,  marching like escort,  the child I was years ago,  the boy in his first love that I was,  the soldier that I was in those days,  and the gray hair that I was one hour ago”   – Yehuda Amichai  

1. The right of older adults with dementia is to be with people who know their life story including cultural habits and religious faith (Bell & Troxel, 2003).

2. Developing friendships, relationships, and trust with people with dementia is the foundation of person-directed care (Bell & Troxel, 2003; Zgola, 1999). Knowing, understanding, and using the life history of the person with dementia is the key to creating and maintaining this foundation.

3. The only way to truly understand an individual in later life in a holistic manner is to see her or him in a life-course perspective.

4. Although more and more cueing is required as the disease progresses, the long-term memory remains relatively intact until the later stages of Alzheimer’s Disease. Therefore, there is a need to “capitalize on what can be remembered from the distant past to help counter the threat to personhood” (Chaudhury, 2002).

5. “Neurodevelopmental Sequencing Approach” in Dementia: Behavior, movement, and functional losses in people with dementia occur in approximately the reverse order of their original development (Buettner, & Kolanowski, 2003). Functional abilities, skills, and activities a person acquired, learned, and enjoyed in infancy, childhood, and early adult life may be relatively preserved into the later stages of dementia. This key principle can be described as “What Goes In First, Goes Out Last.”

6. To be able to have a meaningful interaction and communication with the older person with dementia (e.g., conversation prompter) and to be able to attribute meaning to seemingly incoherent speech (Chaudhury, 2002).

7. To be able to identify, focus, and capitalize on the person’s remaining abilities (yes, we need to understand and proactively compensate for the lost abilities but we also need to avoid focusing excessively on these lost abilities). Due to the progressive nature of Alzheimer’s disease, this is a “moving target” that requires regular assessment and adjusment.

8. To be able to plan, encourage, and engage the person in enriching, appropriate, and meaningful activities based on her or his life-long interests, current abilities, disabilities, and preferences. This, while remaining open to the possibility that life-long interests may change in certain individuals.

9. To understand the meaning of behavioral expressions for the person (Rasin & Kautz, 2007). For example, to be able to identify and address remote triggers from the distant past of distressing behaviors (Landerville et al. 2005). Research and practice have demonstrated a relationship between various early-life stressful events (e.g., life-threatening experiences and traumas) and current distressing behaviors (Cohen-Mansfield & Marx, 1989; Feil, 2002).

10. To be able to design a physical environment in a way that is personalized, familiar to the individual, understandable, and consistent with her or his lifelong positive experiences such as in their homes. This, from general design of physical spaces to cultural, ethnic, and familiar symbols, favorite and personally meaningful objects, and furniture. This, while continuously adapting the physical environment to the person’s cognitive disabilities.

11. To know what in the person’s life gives her or him hope (Kivnick, 1993) and to use this knowledge to nurture this sense in the present.

12. To know what it is in the person’s life (from her/his perspective) that is most worth living for or that makes her/him feel most alive (Kivnick, 1993).

13. To know whom or what the person especially cares about (Kivnick, 1993) and use this knowledge to plan conversations, activities, and care.

14. To know the things that have always given the person confidence and made her or him proud (Kivnick & Murray, 2001) and use this knowledge on a regular basis to promote those feelings and experiences in the person.

15. To know the person’s fears and to make every effort to avoid situations, conversations, activities, and care tasks that trigger those fears.

16. To be able to anticipate and proactively address the person’s physical, emotional, psychological, social, occupational, cultural, and spiritual needs. Various unmet needs related to the person’s psychosocial history often contribute to distressing behaviors (Whall & Kolanowski, 2004).

17. Many family members want to remain involved in the care of their relative when the person lives in a long-term care residence (such as a nursing home or an assisted living residence). Learning about the unique life-history of the person is a great way to involve family members in her or his care (Chaudhury, 2002). This, in turn, could inform and lead to more individualized and effective care.

18. To be able to develop an individualized care plan that respects the person’s values, beliefs, faith, personality, lifestyle, daily routine, habits, coping style, areas of sensitivity, fears, traumas, accomplishments, expectations, interests, special skills, likes, dislikes, hobbies, and preferences.

19. To relate to the person with empathetic identification and make her/him feel that she/he is understood as a real person (Chaudhury, 2002).

20. To be able to see the person behind the dementia and/or her/his behavioral expressions and to preserve her or his personhood, identity, sense of self, and dignity as long as possible (Kitwood, 1997).

Eilon_See_me_not_my_dementia Wood carved piece made out of Butternut. Wood Carver: Eilon Caspi

References  

Bell, V., & Troxel, D. (2003). The best friends approach to Alzheimer’s care. Baltimore: Health Professions Press.
Buettner, L. & Kolanowski, A. (2003). Practice guidelines for Recreation Therapy in the care of people with dementia. Geriatric Nursing, 24(1), 18-25.
Chaudhury, H. (2002). Place-biosketch as a tool in caring for residents with dementia. Alzheimer’s Care Quarterly, 3(1), 42-45.
Cohen-Mansfield, J & Marx, M.S. (1989). Do past experiences predict agitation in nursing home residents? International Journal of Aging and Human Development, 28(4), 285-294.  Feil, N. (2002). The validation breakthrough: Simple techniques for communicating with people with Alzheimer’s-type dementia. (2nd edition). Baltimore: Health Professions Press.
Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Berkshire, UK: Open University.
Kivnick, H.Q., & Murray, S.V. (2001). Life strengths interview guide: Assessing elder clients strengths. Journal of Gerontological Social Work, 34(4), 7-32.
Kivnick, H.Q. (1993). Everyday mental health: a guide to assessing life strengths. Generations, 17(1), 13-20.
Landerville, P., Dicaire, L., Verreault, R., & Levesque, L. (2005). A training program for managing agitation of residents in long-term care facilities: Description and preliminary findings. Journal of Gerontological Nursing, 31(3), 34-4.
Rasin, J., & Kautz, D.D. (2007). Knowing the resident with dementia: Perspectives of assisted living facility caregivers. Journal of Gerontological Nursing, 33(9), 30-36.
Whall, A.L. & Kolanowski, A.M. (2004). The need-driven dementia-compromised behavior model – a framework for understanding the behavioral symptoms of dementia. Aging & Mental Health, 8(2), 106-108.
Zgola, J.M. (1999). Care that works: A relationship approach to persons with dementia. Baltimore: The Johns Hopkins University Press.

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Dementia Farms – Care Farms Additional Resources

Dementia Farms – Care Farms

Additional Resources

The level of interest in Alzheimer’s Speaks Radio show today on Care Farms had so many requests for additional resources for people to be able to check into, I decided we needed an additional post to include more information.  So I hope this helps everyone who is interested in developing a Dementia/Care Farm; or just tapping into some of the benefits within your existing business or care environment.

Below you will find the replay of the show in case you missed.

062314 ASR Dementia Farms Banner author constance H don't leave yetEmail Maarten Fisher at mfischer@aplushc.com   or call him at 406-752-3697

Or Check out the link Above To Watch a Video on Care Farms

flathead_care_farming_snap_where_maarten_worksClick Below To Watch The Video

care_farm_video_snapA Great Research Paper Below

effects_of_care_farms_research_paper_from_maartenClick Above for this 33 page Report

Freedom_FarmClick Above To Find Out About The Freedom Farm

dogs_horses_and_wallabies_lakeveiw_ranch_

Click Above To Read

Contact Judy Berry

Below is a great article by Eilon Caspi, Ph. D. which details

Potential Therapeutic Benefits of Participation of

People with Dementia in Care Farms

Care farming is the combination of agricultural production with health and social services (Di Iacovo and O’Connor). The Care Farm is a novel, rapidly growing, and considerably diverse sector in the Netherlands and other European countries. It offers, among others, day care, supported workplaces, and residential places for clients with variety of disabilities.

Regularly attending and participating in various activities and chores on dementia-friendly Care Farms could enable people with dementia to realize a number of health, functional, psychological, social, and spiritual benefits.

A unique aspect of Care Farms is that many of the potential therapeutic benefits could be realized simultaneously and continuously. In other words, it is the combination of a variety and naturally integrated qualities of Care Farms that could make them effective in promoting the well-being and health of participants with dementia. This, in contrast to many traditional care settings where people with dementia live (either at home or in long-term care residences) and more isolated activities typically enable realizing relatively small number of these benefits at once (there are exceptions of course such as the Green House Model of the Eden Alternative (U.S.) and Arcare Helensvale (Australia), among other enlightened person-directed models of care for people living with dementia).

Selected examples of potential therapeutic benefits of participation of people with dementia in Care Farms include:

1. The various therapeutic health benefits of being outdoors and maintaining connections with nature (e.g., natural sunlight can help regulate sleep awake cycle and production of Vitamin D; enhancement of emotional well-being and restoration; opportunities to decompress; simply enjoying the flowers, birds, sun, and wind; physical relaxation; improved mood; and alleviation of depressive feelings). In addition, at a certain point in the disease, many people with dementia may be at risk of significant weight loss and dehydration. Regularly attending a Care Farm could improve food and fluid intake.

It is important to note that “nature” on farms is defined in broader terms than nature reserves (i.e., natural forests and wild nature). Specifically, it may include, among others, farmland, production forest, urban green spaces, and backyard gardens. In addition, to realize some of the benefits of being outdoors, people with dementia on Care Farms can simply look at nature from indoors. Many meaningful farm and household activities and chores could be performed indoors on Care Farms. This feature could be advantageous in general and on very cold or hot days when these individuals should avoid being in outdoors for extended periods.

2. Physical Activity. Working on a Care Farm offers many opportunities for naturally occurring physical activities. These include, among others, walking to the barn, doing household chores (such as meal preparation), raking the leaves, crafts (sanding or painting fences), gardening, planting, harvesting fruits and vegetables, and taking care of farm animals (such as cows, horses, pigs, chickens, goats, dogs, and cats).

3. Multisensory Stimulation. The inherent characteristics of farms and the wide variety of activities offered in many of them could enable persons with dementia to use all their senses (smell, taste, touch, hearing, and sight). Being in nature offers frequent spontaneous (“organic”) opportunities for using these senses. This inherent feature of Care Farms is important as many people with dementia especially those in mid-to-late stages are often deprived of adequate multisensory stimulation (both at home and in long-term care residences).

4. Doing the different chores on the Care Farm can give people with dementia the feeling that they are needed, useful, and contributing members of society. Feeling productive and helpful to others. Breaking down the vicious cycle of boredom many people with dementia experience in most nursing homes and in the community. Having true purpose and meaning in real life experiences and activities (without artificial situations commonly created in long-term care residences). Having a good reason to wake up in the morning!

5. Many grew up on farms, loved working in gardens, and enjoyed the company of pets. For these individuals, returning to a farm could be a natural continuation from their early life. The long-term memory remains relatively intact in many people with dementia well into the disease. Being on a Care Farm can help unlock cherished memories from the person’s distant past (a treasure chamber waiting to be opened). This means that plenty opportunities for personally meaningful reminiscence could be naturally provided to participants. When farmers take the time to know and use the life history of these individuals, the healing effects of these personal recollections could be further strengthened.

It should be emphasized that many people with dementia who did not grow on farms or did not have a garden or pets could still enjoy and benefit significantly from participation on Care Farms. Others who do not have background in farming, gardening, or working with animals/having pets, might experience the farm as a foreign place, which could lead to feelings of anxiety. So participation in Care Farms is not for all people with dementia. Interdisciplinary assessment at the individual level is key for determining whether a person may benefit from the program. Assessment should continue on an ongoing basis throughout the person’s participation in the program (in general and because of the changes caused by the progression of dementia).

Case Example

An older man with Alzheimer’s disease engaged in two-thirds of episodes of “aggressive” behaviors with other residents on the unit in which he lived (usually as the exhibitor of these behaviors). But once you gave him a chicken to hold in his arm during a pet therapy group activity, he was clearly content and emotional (you could see tears in his eyes when he recalled and shared experiences from as a child growing up on a farm). The preventative effect was clear: he did not engage in “aggressive” behaviors during this personally meaningful activity…

6. Plenty opportunities for learning and personal and occupational growth (yes, many people with dementia can learn well into their disease such as through repetition, practice, clear and consistent routine/structure, and especially when they are interested in and care about what they are doing and when the conditions for success, gentle guidance, and attentive cueing are provided to them). The broad and diverse range of activities and chores done on a Care Farms can promote choice, personalization, stronger sense of autonomy and identity, and varied opportunities for learning and growth (though these must always be adapted to the person’s current preferences and cognitive abilities and disabilities). For example, Care Farms offer natural opportunities for learning about the cycle of life – such as through watching the birth and death of farm animals. This integral part of life is often inadequately addressed or ignored in many nursing homes.

7. Working closely together with farmer(s) and peers may provide natural opportunities for socialization and friendships (with the farmer(s) and with peers). This, in turn could alleviate social isolation and feelings of loneliness. In addition, multi-function Care Farms serving different populations simultaneously offer unique opportunities for intergenerational connections. Specifically, these farms serve mixed client groups such as young people (even children) with a variety of disabilities (e.g., learning or intellectual disabilities, autism, down syndrome, mental illness) along with older adults in general and those with dementia. It should be emphasized, however, that given the unique manifestations and challenges caused by each of these and other conditions, adequate, timely, attentive, and skilled guidance and supervision must be provided to ensure that interactions remain positive (otherwise, in certain situations tensions between peers may occur).

8. The unique, personal, and humane approach of care farmers toward people with dementia is considered a big part of the success of Care Farms (Maarten Fischer, personal communication). Relating to these individuals as equals despite their cognitive and/or other disabilities could empower them in a time of their lives when they struggle to maintain their self-esteem and confidence in the face of an avalanche of losses. Genuinely appreciating their contributions to the farm could encourage participants to take on added responsibilities, which in turn may strengthen their sense of independence.

It is worth mentioning that close trusting relationships is by far the single most important asset we can have when working with and caring for people with dementia. Working together with the same farmer(s) over time can strengthen these relationships, reinforce a sense of reciprocity, and mutual appreciation.

To be successful in building these relationships, most farmers will need to receive high-quality dementia-specific training in areas such as: what it means to live with dementia, effective communication techniques and approaches, principles for engagement in meaningful activities, psychosocial strategies for preventing and de-escalating various behavioral expressions (including aggressive behaviors), knowledge of and ways to implement various features of dementia-friendly physical environment, and safety issues.

An encouraging trend in recent years in the Netherlands is that a growing number of employees or former employees in health care have started Care Farms (e.g., in the Netherlands, the initiators of new on-farm business are often women in general or farm women with a background in health care).

9. When planned and delivered well, engagement of people with dementia in the different activities and chores on Care Farms could help reduce various forms of behavioral expressions and promote positive emotional states. For example, it could lead to reduction in feelings of anxiety and “aggressive” behaviors and use of psychotropic medications (which are mostly ineffective, have many adverse and risky side effects, and are expensive).

10. Care Farms offer natural opportunities to meet the spiritual needs of people with dementia (such as through simply being, regular connections with nature, caring for animals, working in the fields, and growing and harvesting vegetables and fruits). While the spiritual needs of people with dementia are critical, this integral aspect of their psychological well-being is often overlooked in the community and in many long-term care residences.

11. Physical (Green) Environment. Many farms are normal in character and naturally set up in ways that could give the person with dementia a sense of being at home. Substantial portion of Care Farms are also “small-scale,” an environmental feature which is known to be beneficial in this population. To ensure that the farm is dementia-friendly, other features of the physical environment must be evaluated and addressed. These include, among others, provision of adequate lighting, avoidance of glare, avoidance of excessive noise, inadequate outdoors and indoor temperatures (too cold/too hot), optimal levels of stimulation (to avoid causing the person to feel overwhelmed), elimination of distracting clutter, reduction of uneven walking surfaces that contribute to falls, and use of clear signage (with dementia-friendly font and contrast) to increase their ability to successfully navigate their way around the farm.

12. The combination of strength-based and empowerment-oriented approach along with the “normal life” characteristics (i.e., informal non-medical atmosphere) of Care Farms dedicated to people with dementia could assist in reducing the widely-held and harmful stigma experienced by many people living with the disease. How many times we hear people living with dementia refusing to attend a day center or moving to a traditional nursing home?

13. Respite for Family Care Partners. Regular participation of people with dementia in Care Farms can provide sorely needed “time off” for family members; many of whom desperately need a break from the exhausting tasks of caring for and/or supervising their loved ones. While their relatives participate on Care Farms, family members can use these times to rest, recharge, run errands, meet friends, exercise, and engage in their favorable leisure activities. This, in turn could alleviate feelings of isolation and burnout commonly experienced by family care partners, which could strengthen their ability to provide more effective care to these individuals.

Safety Considerations

Prior to any engagement of people with dementia on Care Farms, adequate measures and procedures must be developed (in writing) and put in place to ensure the safety of these vulnerable individuals. Significant number of people with dementia (even in the early stages of the disease) may experience limitations and/or serious cognitive disabilities leading to inadequate or poor judgment of unsafe situations.

Selected examples of potential risks may include falls (people with dementia are at increased risk of falls compared to cognitively healthy individuals), getting lost (due to visuospatial disorientation/wayfinding difficulties), injuries caused by difficulty or inability operating various devices on the farm, mishandling sharp objects, or being in close proximity to electric devices and agriculture vehicles. Certain individuals with dementia may try to eat inedible items (such as dirt or poisonous plants) or drink cleaning and other poisonous liquids. Others may insist on staying outside in the sun on very hot days for long periods without putting sunscreen on and hat with wide margins. Research is needed to identify the full spectrum of potential and actual safety risks for participation of people with dementia on care farms. The knowledge generated in these studies could inform development and implementation of dementia-friendly and safe Care Farm programs.

Beyond those caused by dementia, limitations and disabilities caused by the aging process (e.g., physical; functional; hearing; vision; chronic diseases, etc.) must be proactively evaluated, identified, and addressed and compensated for in a timely manner.

Careful and routine evaluation and written documentation of these physical and cognitive limitations/disabilities is key for implementation of safe and dementia-friendly Care Farm programs for people living with dementia. The evaluation must be ongoing because dementia is a moving target as abilities and disabilities change over time. As importantly, evaluation must include identification of remaining abilities and strengths of participants with dementia. Insights gleaned from these evaluations need to inform efforts aimed at engaging these individuals in personally meaningful and enjoyable activities and chores on Care Farms.

Policy Recommendation

Could this major gap in services for people with dementia be bridged by implementation of large-scale financial reimbursement mechanisms and other incentives that would encourage farmers to develop and offer Care Farm programs for this vulnerable population?

The information in this document is partially based on these sources:

Bruin et al. (2010). The concept of green care farms for older people with dementia. Dementia, 9(1), 79-128.

Bruin et al. (2009). Day care at green care farms: A novel way to stimulate dietary intake of community-dwelling older people with dementia? The Journal of Nutrition, Health, & Aging, 14(5), 352-357.

Bruin et al. (2009). Green care farms promote activity among elderly people with dementia. Journal of Housing for the Elderly, 23, 368-389.

Hassink et al. (2010). Care farms in the Netherlands: Attractive empowerment-oriented and strengths-based practices in the community. Health & Place, 16, 423-430.

Hassink et al. (2012). Care farms in the Netherlands: An unexplored example of multifunctional agriculture – Toward an empirically grounded, organization-theory-based typology. Rural Sociology, 77(4), 569-600.

Schols & van der Schriek-van Meel (2006). Day care for demented elderly in a dairy farm setting. JAMDA, 7, 456-459.

* Special thanks to Maarten Fischer for inspiring me to learn more about this innovative model during his presentation on this topic at the 2014 Gerontological Society of America Annual Scientific Meeting in Washington D.C., generously giving me an informative and moving tour in several pioneering and visionary Care Farms with whom he collaborates in Montana, sharing the above research articles with me, and for his helpful feedback and suggestions for improving this document.

Website          E-mail: eiloncaspi@gmail.com

 

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Brilliant and Bold Commentary Regarding People with Dementia Being Activists

Here is the brilliant and bold commentary regarding people with dementia being activists.  I personally want to thank Eilon Caspi for submitting such a well thought out piece.  This is something everyone concerned about dementia should read.

michael_ellenbogen_video

June 3, 2015

Commentary on Michael Ellenbogen’s Statement as Quoted in a Washington Post Article by Fredrick Kunkle on May 27, 2015: More people with Alzheimer’s are becoming activists – which brings its own challenges. The article can be accessed here: http://tinyurl.com/p87dz9e

washington_post_logo

During a recent meeting of the National Advisory Council on Alzheimer’s Research, Care and Services held on January 26 this year, a staffer read aloud Michael Ellenbogen’s statement:

“What do we need to do to get the attention of people like you? Will it take someone like me to have some sort of shootout like Columbine before someone will take notice? I would not do that but I am trying to get your attention, and I am failing and dying at the same time.”

This statement has led the Department of Health and Human Services (the federal agency that hosts the meetings of National Advisory Council on Alzheimer’s Research, Care and Services) to consider Michael a security threat and to ban him from its premises. In addition, the Alzheimer’s Association disassociated itself from him and told him that he could no longer speak for them.

Does Michael’s statement represent a serious problem and real threat? Or does it represent an opportunity to bring real change in the rights, perception, approach, care, quality of life, and dignity of millions of people living with dementia?

As a society, we have a choice here and my hope is that a serious dialogue will continue to be held about this complex ethical concern, and that it will be possible to carefully sort it out so that we’ll end up choosing the most constructive, dementia-friendly, responsible, safe, and humane option. The stakes are high.

Does these organizations’ response reflect a “dementia-friendly” and “person-directed” approach or more of a biomedical, psychiatric, pathology-oriented, and fear-based approach towards people living with dementia?

Does the response reflect the way our society relates to and treats these individuals? Is it a reflection of the persisting and harmful stigma widely-held about this population?

Should it be concerning that this response is coming from organizations that are supposed to have deep understanding of the lived experience of people with dementia?

Nobody should have to feel offended, threatened, or concerned for their safety by anyone’s remarks, including those made by people with dementia. With adequate and timely support, people in the earlier stages of dementia can and should take responsibility for their words and actions and, if they made other people feel threatened, they need to apologize and actively work hard (within their cognitive limitations and abilities) to find ways to avoid making such statements in the future.

I believe that several dementia-specific person-directed practice principles need to be taken into consideration in this case. These include:

One of the fundamental principles of communication with persons living with dementia is to listen to the underlying emotional message behind the words. Did these organizations truly follow this basic rule? This is not to suggest in any way that the statement should not be carefully and professionally evaluated (see below). Any real, implied, or perceived threat to the safety of people should be promptly and seriously reviewed and evaluated, no matter if the person expressing them has dementia or not.

A second principle is to get to know the life history of persons living with dementia in an in-depth manner. Doing so often helps understand the person and his verbal, non-verbal, and behavioral expressions in the present. Did anyone take the necessary time to learn about Michael’s remote and recent life history thoroughly and directly from him, his wife, his close friends, or from reading his heartbreaking and eye-opening book? The name of Michael’s book is From the Corner Office to Alzheimer’s Disease. For those interested, my review of Michael’s book is available on Alzheimer’s Speaks Blog using this link: http://tinyurl.com/qyz8k9c

Michael ellenbogen book cover

Doing so, would enable to put Michael’s statement in a life-course perspective (e.g. How much he has done and sacrificed personally to improve the lives of thousands of other people living with dementia around the world; if Michael has explicitly expressed in the past that he is considering hurt someone, to my knowledge, it was in the context of ending his own life because of the worsening disabilities caused by his dementia and his wish not to become a burden on his family). Learning about Michael’s recent life-history would also enable to take into full consideration his unimaginable psychological suffering caused by the disease combined with the frustrations caused by lack of sufficient progress in developing (and adequately funding) psychosocial approaches (formerly called non-pharmacological approaches) to support and meet the human needs of people living with the disease and their care partners (family and paid). This, I believe, is likely the context for Michael’s statement.

A third principle is that many people with dementia may say things that they don’t intend and/or would not otherwise say if they were cognitively healthy (most would be mortified if they knew what they have said). Here I relate to problems with impulse control, disinhibitions, lower ability to regulate emotions such as strong frustration and anger, as well as reduced ability to anticipate the consequences of one’s statements.

If Michael would be willing, a compassionate whole-person interdisciplinary assessment could bring to the surface insights into his actual thinking process, cognitive disabilities and abilities, and his personal perception of the situation. Results of such assessment could inform the way this event could be perceived, revisited, and resolved.

Skilled experts should be able to sit with Michael as equals and assess his condition and thought process and determine whether he is truly considered a threat to others. I doubt it but given that the statement has already been made, perhaps this needs to be done to reassure the public and the organizations in question and others with which Michael collaborates that their safety is not under threat. If determined otherwise, then a humane and respectful approach should be considered and implemented to ensure the safety of people in these organizations and the general public.

Michael’s criminal record should be reviewed to rule out any possibility that he has made serious threats to harm others or has been violent in the past (before and after his dementia onset). Again, to reassure people who truly felt threatened for their or others’ safety, I believe that this needs to be done. Physically aggressive behavior and violent tendencies in people’s past often (though not always) predict similar behaviors in the future (whether one has dementia or not).

Some people with specific Dementias such as the behavioral variant of Fronton-Temporal Dementia, Korsakoff’s Syndrome, Chronic Traumatic Encephalopathy, among other forms of dementia, are more prone to and capable of inflicting serious harm to those around them. If not done very recently, an accurate diagnosis and assessment could and should be conducted with Michael. Even if he is diagnosed with one of those forms of dementia shown in the past to have higher probability of engaging in physically violent behaviors towards others, it still doesn’t necessarily mean that he, or other people with these conditions, will engage in violent behaviors towards others. Every person with dementia is unique and the actual impact of dementia on every person is different. Ongoing interdisciplinary individualized assessment is the key.

A fourth principle is that by far the most important asset we can have when we interact and care for persons living with dementia is developing close trusting relationships with them. This is hard to build and maintain and easily destroyed. Once you develop it, you are in a good position to truly understand the person and the underlying meaning of his/her verbal and non-verbal expressions. In this case, it could enable these and other organizations in interpreting Michael’s statement as a desperate call from an aching heart for a fundamental change in the way our society perceives, approaches, cares for, and treats these individuals. How many people from these organizations took the time and effort to develop and maintain this close trusting relationship with Michael?

I do know that a few people involved in the Advisory Council did try to assist Michael over the years to increase the likelihood that his messages in his speeches will be more receptive by and less offensive towards council members. I do not know the extent to which these efforts were successful in the past but clearly it wasn’t this time.

The fifth principle is that dementia is a disability (see Americans with Disability Act) but cognitive disability tends to be invisible. This creates the potentially dangerous illusion that persons living with dementia are fully capable of functioning as people with healthy brains. An experienced and skilled professional should have been assigned to review Michael’s transcript several days prior to the speech. It sounds as though his transcript was either not reviewed or not carefully reviewed. If it was, the statement would have been easily identified, brought to Michael’s attention, and, knowing him, he would have left it out and the ordeal would have been prevented.

Which leads me to the sixth principle. Preparation, preparation, preparation. Or being proactive, rather than reactive. Unfortunately, in the majority of interactions with people with dementia most people and organizations still use a reactive approach (i.e. the tendency to respond only after a problem occurs; nursing homes are a sad example of that but this is also very common at the home setting with burned out and unsupported family members and in the community in general). This approach is inconsistent with the Anticipatory Care Approach to people with dementia (coined by Prof. Christine Kovach).

Were the conditions for success proactively and thoughtfully created for Michael before his words were read at that meeting? The voice of people living with dementia is too precious to be left without gentle and attentive professional guidance (which must be done collaboratively in a true partnership with these individuals). Working with Michael on his transcript while preserving his key messages in a respectful way and at the same time alerting him for potentially problematic statements would have avoided the unfortunate event. Without downplaying the fact that Michael freely chose to use these words, it also begs the question of Did the staffer who read Michael’s statement during the meeting identified the problem prior to the meeting (i.e., during his/her preparation for the reading) and, if so, what did he/she do about it when he/she discovered it?

The seventh principle is that person-directed approaches to people living with dementia should be driven predominantly by focusing on their remaining abilities, not their disabilities. Their disabilities need to be proactively identified and compensated for in a timely manner. They need our help and support to function the best they can despite their limitations.

True “culture change” means being guided by hope, not fear. By opportunities for thriving and innovation, not life-limiting barriers used (too often) in the name of safety. Take the sad example of typical nursing homes, which focus excessively on safety and while doing so often deprive people with dementia of their right to adapted autonomy and life worth living. Again, this is not to suggest that safety of people should not be protected; it must but in a reasonable and wise way and always based on skilled, ongoing, and timely individual assessment.

Could it be that this event reflects blame the victim approach? Is Michael being blamed for using these words when there is a reasonable likelihood that the limitations caused by his dementia have contributed if not directly caused him to choose this statement? Michael himself acknowledged it. This approach is used frequently in all settings were people with dementia live and during daily interactions with them in the community.

Mourning the losses each step of the person’s journey with dementia and genuine acceptance of the changes that come along with it are critical for the ability to support them, understand them, work with them, and gain from their invaluable insights. These organizations know this principle well but did they truly walk the walk in this case? Nobody ever said that working with and caring for people with dementia is easy. It requires tremendous amount of empathy, patience, determination, and creativity.

Has Michael, whom I know to be a very compassionate, and empathic person, ever said anything of this nature to anyone around him…family members, friends, co-workers, neighbors? I doubt it, but this could and should be checked to reassure people that he doesn’t have these lifelong inclinations.

Michael’s words were read already

Michael’s words were read already, but it is worth restating that at the same sentence he was quoted saying that he won’t do it. Did this part of the sentence receive the appropriate weight in this discussion? Once a person with dementia is labeled “violent” or “security threat” we tend to stop seeing who the person really is and what caused him to say what he said. There is always a good reason and function behind verbal and behavioral expressions of persons with dementia. It is the job of people who come in contact with those living with dementia to decode and identify the reasons and fulfill their unmet human needs, which commonly underlie their verbal and behavioral expressions.

My remote reading of this incident is that it was a reflection of tremendous frustration accumulated over several years of Michael’s passionate, courageous, and determined advocacy work for (not against) the well being and safety of countless people living with dementia and those who care for them or otherwise interact with them in the community.

Michael’s dementia painfully progresses and, while he had numerous accomplishments in his advocacy work in recent years, he also experienced heartbreaking failures. Michael also copes with tremendous health challenges beyond his dementia. It is well known in the field that when people with dementia are under pressure (existential, health-related, and situational), they may say things that they would have not have said if they were cognitively healthy. As noted above, their frustration and anger threshold is lower than that of people without a serious brain disease. Looking at Michael (such as the picture published in the Washington Post article), it is very easy to forget that Alzheimer’s is a terminal disease.

Using an empathic approach to people living with dementia means doing everything we can to try and “step into their shoes” and strive to understand their lived experience. I believe that if the decision makers in the organizations in question would live a single 24-hour day in the shoes of people living with dementia, the whole case would either be prevented to begin with or approached differently after it occurred. We do it all the time with people with dementia. We assume things about them and then we (quickly) act upon these assumptions. My advice: Get to know Michael first as a whole human being, then his dementia, disabilities caused by it, as well as his remaining abilities (there are still many), and only then decide what would be the most reasonable course of action. If this has been thoroughly done, I take these last words back.

Michael has already apologized for his statement and should be released from the misery that this situation has brought him. While of course in no way I or anyone else should justify or support his statement, I think that it is important to recall and think about the main issue here: What did he actually try to accomplish on that day? Make people angry and feel threatened? Or improve the lives of people who struggle tremendously living with the disease in a society that does not provide adequate infrastructure to support them and their family and paid care partners?

If Michael needs additional and closer guidance in crafting his future speeches, this could be done without too much effort (I and I’m sure others will be willing to work with him on reviewing his future transcripts prior to his speeches). Ongoing, skilled, attentive, compassionate, and timely guidance could enable him to be successful in his advocacy work. Isn’t this what interacting and caring for people living with dementia is all about?

We have to remember that the true experts when it comes to the lived experience of dementia are people with dementia themselves.

They are the best teachers we have. Michael is not the only leading advocate when it comes to promoting the rights of people living with dementia. Good examples include Richard Taylor, Harry Urban, Robert Bowels, Kate Swaffer, and Sandy Halperin to name a few.

For Michael’s sake and for all other current and future leading advocates living with dementia who dedicate their lives for this human rights and public health issue, I believe that a serious reflection and discussion needs to be held to ensure that we do not fall into the trap of inadvertently being driven by the widely-held stigma and fear in our society about people living with dementia.

I believe that the voices of millions of people with dementia around the world, which are not heard due to their brain disease, can and should continue to be heard through Michael’s courageous voice and vision for a dementia-friendly society, as long as he still can…

In Michael’s words, “Never give up with your dreams, and drive forward until the end. You can still make a difference. Try to advocate for the ones who cannot, because we will be them one day.”

Would discontinuing collaborations with Michael end up doing disservice to a large and growing number of people with dementia who are no longer capable of advocating for themselves?

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Let it be a story of hope, not fear. Of responsible compassion. Of true human connection and inclusion, not exclusion. Of true learning, not labeling. Of innovation, creativity, and progress. Of deep appreciation of what it means to be human and the importance of being interdependent on each other.

In the words of the late Prof. Tom Kitwood, author of the groundbreaking book, Dementia Reconsidered: The Person Comes First, “People with dementia may have something to teach the rest of human kind. If we make the venture one of genuine and open engagement, we will learn a great deal about ourselves.”

Copy of DC_HQ_062714_bannerpurple Disclosure: The author of this article have known Michael for over 2 years primarily from volunteering with him on the Dementia Chats webinar platform of Alzheimer’s Speaks (founder, Lori La Bey). The author did not attend any of the aforementioned Advisory Meetings.

Eilon Caspi picEilon Caspi Ph.D., Gerontologist & Dementia Behavior Specialist

Author of the upcoming book: The Guidebook for Prevention of Resident-to-Resident aggression in Dementia. Health Professions Press.

Website: http://eiloncaspi.com 

Archival Blog on Resident-to-Resident Aggression in Dementia: http://eiloncaspiabbr.tumblr.com

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