Family Cooperative Toolkit

FAMILY

COOPERATIVE A collaborative caregiving toolkit for individuals with dementia & their families A CREATION OF THE KU ALZHEIMER’S DISEASE RESEARCH CENTER COGNITIVE CARE NETWORK TEAM

TABLE OF CONTENTS

01 INTRODUCTION

03 HOW TO BEGIN

The Need for a Family Cooperative ...... 1 What Can a Dementia Care Cooperative Do for You? .................................................. 1 You May Want to Consider Starting or Participating If ............................................ 2

02

COOPERATIVE STRUCTURE Overview ......................................................

Goals ..............................................................

Connect with Other Families Who May Want to Participate ..........................

Hold an Introductory Meeting ...............

Educate Host Caregivers .........................

4 4 4

04 EXPECTATIONS 3 3

For Host Caregivers ...................................

For Potential Participants ........................

5 5

07 APPENDICES

05 SUPPORTIVE TOOLS Participant Information Packets ...........

Background Checks ...................................

Host Time Tracking ...................................

6 6 6

06 ACTIVITIES FOR PARTICIPANTS

Considerations ............................................

Music .............................................................

Reminiscing & Conversation ..................

Art ...................................................................

Activity Kits .................................................

Physical Activity .........................................

Movies & TV Shows ..................................

In Summary .................................................

7 8 9 10 11 16 17 18

APPENDIX A - Liability Waiver ...........

APPENDIX B - Confidentiality Statement .....................................................

APPENDIX C - Participant Information Packet .............................

APPENDIX D - Host Time Tracking Example ..............................

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INTRODUCTION The Need for a Family Cooperative In Kansas, there are 60,000 individuals living with dementia, and in Missouri, 120,000.

To navigate these dementias, such as Mild Cognitive Impairment and Alzheimer’s Disease, specially tailored education and tools are required. We know the positive impact of wellness activities and social support on managing memory changes in a way that protects capacity and joy. Wellness strategies can include physical activity, depression management, and socialization.

Finding and keeping connections with others is especially important, and we do not have affordable enough formal programs that provide those living with a memory disorder with these positive social opportunities.

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What Can a Dementia Care Cooperative Do for You? In a dementia cooperative, caregivers (from different families) take turns supporting and engaging a small number of individuals with a dementia-related memory impairment, such as Alzheimer’s Disease, usually for one afternoon a week. A dementia cooperative provides: • Shared no-cost support • Socialization opportunities • Companionship for persons with similar interests • Appropriate, engaging activities • A break for caregivers

When reviewing this toolkit, please note that each time we refer to memory impairment, it is intended to include Mild Cognitive Impairment, Alzheimer’s and/or any form of dementia.

Consider Starting or Participating If...

• You have a family member with a memory impairment.

• You are a caregiver who could use a break from caring for someone with memory impairment.

• You have someone in your family with dementia who could benefit from greater socialization with others.

• The person experiencing memory impairment/dementia is able to walk and can independently manage tasks such as toileting and eating.

This handbook provides a step-by-step guide for setting up a family cooperative.

It includes ideas for finding other families, considerations for setting up a workable structure, activity ideas, and adaptable document templates.

It is our intent that the information that follows be adapted and vetted on an individual basis. All liability is assumed by those participating in the cooperatives, and as such, thorough dialogue among participating families and appropriate professionals is necessary.

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COOPERATIVE STRUCTURE Overview

Goals

A caregiving family cooperative is comprised of two to four families, each of which has a family member who is living with dementia.

Caregivers alternate providing support to the set of individuals with dementia who are in the cooperative. Typically, support would take place one day a week within a limited timeframe, such as four hours. This gives the other caregiver(s) a break.

• Social opportunities for those living with a memory impairment • Short-term respite for caregivers • Expand access to support for families • Interaction between participants with shared interests • Increased engagement • Maximize the capacity and enjoyment for individuals living with a memory impairment

Faith communities or other organizations could also play a role. For example, a church could provide a location for the dementia care cooperative to meet, or volunteers from community organizations could provide direct support, food, or participation in activities.

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HOW TO BEGIN Connect With Famillies Who May Want to Participate • Reach out to people you know in the community • Contact caregiver support groups • Ask clergy, doctors, and other professionals who work with older adults, such as the Area Agency on Aging • Post flyers on community bulletin boards, such as those in libraries or community centers • Reach out through social networking apps such as Nextdoor, Olio, and Lotsa Helping Hands

Hold an Introductory Meeting • Invite families who have expressed an interest in learning • Share criteria and limitations • Have a group discussion and determine individuals who would be willing to host • Determine potential locations, such as rotation of participants’ houses or other locations, such as a church • Determine a realistic, consistent schedule, such as four hours once a week

• Agree upon what will be provided, such as a snack or a meal • Discuss interest areas and potential activities • Share and/or complete participation forms (SEE APPENDICES)

Educate Host Caregivers Those who agree to act as hosts in the cooperative should receive education on how to effectively support and engage individuals with dementia. Education will be important in supporting comfort levels and benefits.

The following are possible education formats: • Books such as Creating Moments of Joy

by Jolene Brackey • Teepa Snow, YouTube training videos - www.youtube.com/user/teepasnow • Online education through the Alzheimer’s Association website - www.alz.org • KU Alzheimer’s Disease Research Center Mindful Minutes - kuadrc.org/MindfulMinutes • Join MyAlliance for Brain Health through KU Alzheimer’s Disease Research Center - kuadrc.org/MyAlliance_info

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EXPECTATIONS For Host Caregivers Those providing care will need to meet the following criteria: • Complete recommended forms, including background check • Be committed to providing care for cooperative participants at the agreed-upon dates and times • Have adequate space for the participants with dementia to meet, whether that be your home or another community space • Physically and emotionally able to host • Agree to prepare and engage participants in an activity plan for the allotted timeframe • Ability to adjust and be flexible as needed

For Potential Participants Those with dementia will need to meet the following criteria: • Be independent in personal care, including eating, toileting, etc.

• Have no need to take medications during participation hours • Stable mood around others • Walk and transfer without assistance • Ability to engage with others

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SUPPORTIVE TOOLS Participant Information Packets

Background Checks

It is recommended that all hosts undergo a background check. The following websites Create an information packet for each offer background check services: participant. The family member should • Checkr: $29.99-$79.99 provide information about: Search Time: 3-7 business days, • Medications and medical issues (to there is no set up fee inform first responders in case of • Trusted Employees: $29.95-$69.95 emergency) Search Time: 1-3 business days, • General interests there is no set up fee • Usual routines • TransUnion ShareAble: $25.00-$60.00 • Emergency contacts Search Time: minutes-3 business days, • Allergies and foods that should be avoided there is no set up fee • BackgroundChecks.com: $33.15-$69.95 Participant packets should be reviewed by Search Time: minutes-3 business days, the host, available for future reference, and Setup Fee: $19.95 maintained in a confidential manner. A blank • Additional options may be found through packet can be found in APPENDIX C. your local police department or Area Agency on Aging Pricing information collected April 2023, subject to change

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SUPPORTIVE TOOLS Host Time Tracking

Considerations

You may want to keep track of the number of hours given and received. Consider utilizing a shared digital document accessible to all hosts. Using an honor system, each family member could enter the number of hours they have hosted and the number of hours they have benefitted from other hosts.

Activities provide an opportunity for engagement, connection, and pleasure and can often reduce distress.

Considerations for activities might include shared interests, history, current and past hobbies, and current abilities. This information will be noted in their Participant Information Packet (APPENDIX C). As an example, a former office worker might enjoy activities that involve organizing or sorting, and a former farmer or gardener may enjoy activities outside. Many activities can be modified to the person’s ability and may be adjusted as the disease progresses.

Alternatively, the group can designate one person to keep track of the hours given and received by each host. One cooperative found it helpful to enforce a maximum number of 20 hours owed to ensure equal participation among families. If a family member has participated for 20 hours and has not reciprocated by hosting themselves, Simple, easy-to-follow steps are important the participation is paused until the time tracking is balanced. An example form can be when introducing or demonstrating an activity, but it is not necessary to force things; found in APPENDIX D. just let them happen.

While we offer several examples on the following pages, ideas are only limited by your imagination. Have fun with it!

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ACTIVITIES FOR PARTICIPANTS

Music It is proven that music memories often remain in the brain even as language and other memories disappear. Music can be introduced for a calming effect or be engaging and energizing. Regardless of the purpose, consider music that is familiar and associated with prior experiences.

Other ideas: • When playing music, choose a source that is commercial-free to avoid causing confusion • Have a sing-along of favorite songs from earlier eras and consider all music types • Include movement, from foot-tapping and clapping to arm-waving and dancing • Consider incorporating simple instruments, such as wooden instruments, or think about what you already have on hand. Pots/pans or a cardboard box combined with wooden spoons can create drums, or plastic containers filled with rice or marbles can act as shakers • Play “name that tune” types of games • Have a conversation about a particular song and what it reminds them of

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ACTIVITIES FOR PARTICIPANTS

Reminiscing & Conversation Reading or being read to, whether it be stories or poetry, can provide a sense of companionship and be a positive mental exercise, prompting great conversation and discussion.

There are several narrative and picture books that are written and designed specifically for adults with memory problems. A variety of examples can be found at the following links and can be checked out at your local library or purchased online.

When choosing books or magazines to facilitate a discussion, select options that stimulate memories, promote joy, and are personally relevant to the participants.

Examples include: • Chicken Soup for The Soul • Audiobooks through your library • Old magazines, such as Sports Illustrated, Better Homes & Gardens, or Reminiscence

When we ask someone about their life experiences and provide an opportunity for connection, amazing things can happen, and beautiful stories can unfold. Begin with leading statements, such as “Tell me about…” and follow up with “Tell me more about...” Some suggestions for finishing these statements are below, but the topics could be endless.

“Tell me about/more about...”

• your first girlfriend/boyfriend • your first school memory • your favorite (or least favorite) teacher/ school subject, • your first car • your favorite music • your favorite childhood games • getting married There are many tools that can facilitate reminiscence. Here are just a few: • Photographs • Scrapbooks • Old letters • Memory boxes containing special items to remind one of happy times • Music or film clips from a relevant era • Magazines The Timeslips program is another useful source to bring meaningful joy through storytelling. It could be as simple as showing a picture and asking questions that lead to the creation of a story and can be done as a group or one-on-one. See a full description and get some great ideas at www.timeslips.org.

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ACTIVITIES FOR PARTICIPANTS

Art Painting, drawing, coloring, crafts, and art in general can enhance one’s quality of life. Gather pencils, crayons, markers, paints, tape, paper, scissors, glue, glitter, and whatever else you can think of, and get creative! Use calendars, magazines, greeting cards, photographs, or any number of things to draw inspiration. Here are some quick ideas: • Coloring: There are many adult coloring books available for purchase at local craft supply or bookstores, as well as online.

You can even download free images online from places such as www.crayola.com/ free-coloring-pages/adult-coloring-pages/ • Watercolor painting • Collaborative drawing: Building on the storytelling section, create a collaborative drawing where turns are taken to draw a picture collectively. Check out https://datatherapy.org/activities/ for more ideas • Collage: Have some old photos? Organize them in a scrapbook, photo album, or collage

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ACTIVITY KITS Putting an activity kit together can be easy and could consist of things around the house.

Be sure to include items that encourage reminiscence and utilize a variety of senses, interesting shapes, textures, and smells.

Below are some examples of kits and what they might include.

Gardening Kit • Seed packets • Long strips of biodegradable paper (such as toilet paper), water, and flour to make seed tape (simple to follow instructional videos can be found on YouTube.com • Baggies of soil, small pots, garden gloves, and a small trowel • Artificial flowers • Small, non-breakable vases • Garden magazines/books • Magnetic garden pieces/magnetic board

Handyman Kit • • • • • • • •

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Wooden blocks Sandpaper block Jar of nuts, washers, and bolts to sort Square plywood board with various holes to fit nuts/bolts Toolbelt Related magazines with illustrations Locks Keys for locks on key rings

Sewing Kit • • • • • • •

Foam quilt pieces in contrasting colors Laminated quilt pattern pages Yarn to roll (with roll started) Buttons that can be sorted by color/size Large beads and heavy string Quilting books Different sized thimbles

Office Kit

Art Kit

• • • • •

• Simple Geoboard • Coloring books and colored pencils, crayons, or markers • Paint squares • Laundry pins with correlating paint square (smaller) glued on so they can clip the pin on the paint square • Paint brushes and cleaning cloth • Mosaic pieces to sort/design • “Magic Water” drawing mats • Small chalkboard and chalk

Thick rubber bands of varying colors to sort Large paper clips of multiple colors to sort File folders of different colors Papers with headings that correlate Rolodex with clear pockets to put business cards in • Business cards • Old coffee cans • Adding machine or calculator

Cooking Kit • Recipe cards • Highly-illustrated cookbooks • Measuring cups and spoons that can be stacked/sorted • Bread dough secured in a bag (large freezer bag or baking silicone bag) that can be kneaded • Old silverware to sort • Food/cooking-related stickers to put on recipes that sound good to the person

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ACTIVITY KITS Relaxation Kit • Scented wheat bags (small bags of wheat that can be microwaved or frozen and used to soothe body aches and pains, often scented with lavender, eucalyptus, etc.)

• Fidget toys of various shapes/sizes that can be stretched, twisted, or squeezed • Scented lotions (could give hand massages) • Scented/edible playdough • Silly Putty • Feathers • Pin art toy

Great Outdoors Kit • Audubon Birds Assortment from wildrepublic.com • Smooth pebbles/river rocks in various colors to sort • Duck calls • Hiking/outdoor illustrated guides • Nature sounds machine • Pinecones • Various oak acorns • Flannel square • Camouflage hat • Tree bark • Binoculars

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Fashion Kit • • • • • • •

Laminated paper dolls Costume jewelry/earrings to be matched Patterns Nail polish Barbie dolls/clothes Old fashion magazines Interesting fabric samples on a ring

Sports Kit

Bygone Days Kit

• • • • • • •

• • • • • • • •

Baseball/sports cards Sports Illustrated/other sports magazines Piece of AstroTurf Squeeze balls - baseball, basketball, football Baseball mitt Child’s sports jersey Blow-up beach ball in sports theme

Small Games Kit

Dolls/clothes Silver/silver cleaning cloth Home magazines Doilies Children’s tea party set Recipe cards in different colors Vintage cookbooks Old photos

• Playing cards (lay out face up and match the numbers or suits) • Jacks • Marbles to sort by size/color • Dominoes • Chess or checker pieces to sort by color • Small puzzles or minors’s puzzles with pegs • Mr./Mrs. Potato Head

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ACTIVITY KITS Photography Kit

Collectors Kit

• Older model camera and strap • Assorted, laminated B/W and color photos (8” x 10”) • Camera bag • Metal/plastic film canisters • Fun props that might be used in a photo shoot, such as scarves, hats, or glasses (sort by type)

• Small figurines like Hummel or Precious Moments • Price tags in different colors • Small garage/yard sale sign • Small, typical garage/yard sale items that a person could sort, such as silverware, salt/pepper shakers, small tools, Beanie Babies, etc.

• Auction paddle with bid number • Baseball cards • Hot wheels cars • Sample auction advertisement that would have run in the newspaper

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Physical Activity Physical activity is so important for all of us.

It provides an opportunity to improve many aspects of our lives, from sleep to mobility and independence.

Walking, even indoors or around the yard, is a common example of exercise. Here are just a few more ideas that can be done seated or standing: • Marching in place • Hot potato (pass the potato or other object around a circle to music; whoever is holding the potato when the music stops is eliminated until everyone is out) • Balloon/bean bag toss • Kick a beach ball • Blow and pop bubbles • Stretch and do “The Wave” • Sing and play the Hokey Pokey • Chair exercise routines

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ACTIVITY KITS Movies & TV Shows TV shows or videos featuring animals or music are good choices. Musicals might provide an opportunity to sing along. Turner Classic Movies and TV Land networks offer popular films and programs from past eras. Examples of suggested programs: • • • • • • • • • • •

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The Andy Griffith Show (1960-1968) Bonanza (1959-1973) Calamity Jane (1953) Camelot (1967) The Carol Burnett Show (1967-1978) Grumpy Old Men (1993) Guys and Dolls (1955) I Love Lucy (1951-1957) It’s a Wonderful Life (1946) The Lawrence Welk Show (1955-1982) Leave It to Beaver (1957-1963)

• • • • • • •

Paint Your Wagon (1969) Singin’ in the Rain (1952) The Sound of Music (1965) The Waltons (1971-1981) West Side Story (1961) The Wizard of Oz (1939) Animal Planet/Planet Earth-style documentaries • Hallmark movies • Dog shows • Reality dancing shows

In Summary Activities do not need to be structured or complicated. One of the best ways to help a person with dementia remain active and stimulated is to allow them to be involved in day-to-day tasks. Being busy or occupied allows a person to gain a sense of satisfaction, contribution, and achievement.

Below is a list of ideas not necessarily referred to in the sections above. We encourage you to think outside the box; you might be surprised at how many activities you can come up with on your own.

• • • • • • • • • • • • • • • • • • • •

Clip coupons Sort poker chips Count tickets Rake leaves Bake/decorate cookies Plant seeds indoors or out Share/discuss photographs Make homemade lemonade Make a family tree poster Cook hotdogs outside Play horseshoes/yard games Make homemade ice cream Make Holiday cards Write a letter to a family member/friend Weed the flower bed/vegetable garden Cut pictures out of greeting cards/magazines Sort objects such as buttons or beads by shape/color Say “Tell me more” when they share a memory Make a Valentine’s collage Dye eggs

• • • • • • • • • • • • • • • • • • • •

String Cheerios or Froot Loops Have a tea party Remember great inventions Cut-out paper dolls Identify states and capitols Place fish tanks, real or otherwise, for visual stimulation Make no-bake recipes Polish silver Pick flowers and press them into a book Play cards or a board game String popcorn Shuck corn Snap beans Sort nuts/bolts Trace cut leaves Build with Legos Stroke/massage hands Pet/spend time with an animal Use sensory books/items to see, touch, and feel Place bird feeders on windows for visual stimulation

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APPENDICES

The following are examples only; please make adjustments as needed to fit the guidelines agreed upon by the families in your cooperative.

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APPENDIX A LIABILITY WAIVER Participant’s Name ___________________________________________________________________ Address ______________________________________________________________________________ City __________________________________________________________________________________ Participant’s Phone # ________________________________________________________________ Emergency Contact Name(s) ________________________________________________________ Emergency Contact Phone # _________________________________________________________

In consideration for the above individual’s participation in the Family Cooperative, I hereby agree to assume all the risks of any and all injury to, disability, or death of the participant associated with the coperative. I agree to release the other hosts and participants of the cooperative, as well as family members, from any liability resulting from any ordinary negligence that may arise in connection with this cooperative.

Signature ____________________________________________________________________________ Date _________________________________________________________________________________

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APPENDIX B Confidentiality Statement I understand that I will be a part of a Family Cooperative where I may see or hear personal information about and from the participants and their families. I agree to take this seriously and will honor the necessity of privacy and respect by not discussing any information about individual participants or their families with anyone outside the Cooperative unless given specific written permission to do so by the individuals involved.

Signature ____________________________________________________________________________ Date _________________________________________________________________________________

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APPENDIX C Participant Information Packet The following can be helpful to caregivers and/or referred to in case of emergency.

Participant’s Name ___________________________________________________________________ Address _______________________________________________City__________________________ Entry Date ______________________Age_____________________DOB_______________________ Gender ____________________________________Marital Status ___________________________ Emergency Contact Information Family Contact ____________________________________Relationship_____________________ Phone # _____________________________Address________________________________________ Alternate Contact _________________________________Relationship_____________________ Phone # _____________________________Address________________________________________ Alternate Contact _________________________________Relationship_____________________ Phone # _____________________________Address________________________________________ Diagnosis ____________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ Medications _________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________

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Allergies _____________________________________________________________________________ _______________________________________________________________________________________ Foods to Avoid _______________________________________________________________________ _______________________________________________________________________________________ Durable Power of Attorney/Legal Guardian _________________________________________ _______________________________________________________________________________________ ______________________________ Advanced Directives _________________________________________________________________ _______________________________________________________________________________________ Relevant Physical Considerations ___________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ Identified Strengths _________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ How Participant Spends a Typical Day _______________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________

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Pertinent Social History _____________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ ______________________________________________________________________________________ Participant’s Preferred Hobbies, Interests, & Subjects ______________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ _______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ Other Relevant Information ________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _____________________________________________________________

Completer’s Signature _______________________________________________________________ Date _________________________________________________________________________________

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APPENDIX D Host Time Tracking Example

Host Name

Date

Minnie Mouse 01/06/2024

Hours Hosted

Hours Benefitted

4

Donald Duck

01/06/2024

4

Charlie Brown

01/06/2024

2

Donald Duck

02/15/2024

Charlie Brown 02/15/2024

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THANK YOU for your interest in the Family Cooperative!

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A CREATION OF THE KU Alzheimer’s Disease RESEARCH CENTER COGNITIVE CARE NETWORK TEAM

To stay connected with the KU ADRC, join MyAlliance at kuadrc.org/MyAlliance_info

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