Family Involvement and Dementia


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Family Involvement and Dementia

Sycamore Village Assisted Living hosts free monthly seminars for the community. "Family Involvement and Dementia" was presented at the December 2011 seminar, by Natalie McFarland, RN, BSN and Dementia Care Educator.

Topics include:

- How to build family partnerships

- How to offer opportunities for family involvement with care of
the loved one with Alzheimer’s

- Learning how to interact effectively with family members.

For more information, contact us:

Published in: Health & Medicine
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  • Physical - participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than non-caregiving controlsEmotional – Denial (PWD has good days which leads a family member to question whether or not he/she has dementia, helplessness (loss of control regarding inevitability of the disease process and care for the loved one), anger (why my family? I shouldn’t resent my wife.), family conflict (everyone has different expectations and ideas of what a loved one may need, loneliness (cannot relate to the PWD like they once could)
  • The goal is for family members to begin to perceive staff as extended family so that they are more trusting and willing to join staff in realistic expectations of care and outcomes. Families will know staff is caring when they “catch” staff in the act of caring. Knowing their life story shows that they care about the person’s routines, interests, likes/dislikes.
  • There are often two sides to every story and we seldom know the whole story. It’s okay to acknowledge hurt within a family but it’s not okay to get in the middle of a family feud.
  • Family Involvement and Dementia

    1. 1. Natalie McFarland, RN, BSN Dementia Care EducatorNatalie has supervised the Alzheimer’s and Dementia related programming atSycamore Village since 2004. She is a registered nurse and Sycamore’s on-sitedementia care expert.Natalie is “train-the-trainer” certifiedthrough the Alzheimer’s Associationand The Best Friend’sApproach, providing continuousAlzheimer’s education to staff andfamilies.Natalie has presented at both the Illinoisand Missouri Pioneer Coalition StateConferences, local Chamber of Commerce, hospitals, several healthcarefacilities, and to the local community.Natalie is featured quarterly on the Norm Greenberg Show through the localCharter Cable Network discussing a variety of dementia-related topics.
    2. 2. Mission• To be our community’s resource fordementia care, research and education•To provide comfort, care, love and educationto both our residents and their families livingwith dementia• To reach out beyond our walls and supporthealthcare providers, caregivers, familymembers and others in the greatercommunity challenged by this degenerativedisease through prevention, education, earlydetection and research initiatives• To return the love to those we are privilegedto serve by fostering friendships andacknowledging their live stories
    3. 3. Dementia Overview a broad term for any brain disorder that causes confusion, memory loss, personality changes, and mental decline
    4. 4. Dementia OverviewAlzheimer’s Disease is a brain disordernamed for German physician AloisAlzheimer, who first described it in 1906. He presented the case of “Auguste”, a 51 year old woman.
    5. 5. Alzheimer’s Overview • Is a progressive and fatal brain disease • Causes plaques and tangles in the brain that destroys brain cells • Is the most common form of dementia • Has no cure
    6. 6. Family Experience• 1 out of every 3 families in the United States is affected by AD in some way.• What are some challenges families may face when they are caring for their loved one with dementia?• Physical, Emotional, Legal
    7. 7. Family Experience• Physical – loss of sleep, fatigue, no time for one’s self, increased risk for injury and illness• Emotional – denial, helplessness, anger and resentment, frustration, family conflict, fear, inadequacy and guilt, hopelessness, depression, sadness, loneliness, isol ation• Legal – complicated decisions, planning of assets, ethical questions, feelings of uncertainty about decisions made, worry, self-doubt
    8. 8. Family Dynamics• Families will experience similar feeling as they start new services or admit their loved ones into long-term care facilities.• What are some possible barriers for family members to accepting help? Emotional? Financial?
    9. 9. Family Barriers• Financial – high out-of-pocket costs, insurance decisions, impact on family members• Emotional – doubt, frustration, loss of control, helplessness, stress, fe ar of – how can a stranger know what is best for my mom? Doubt Frustration – guilt, unrealistic expectations unknown,caused bygrief, denial, fati of care Fear of unknown – lack of trust, gue – loved one may be resistant to starting care, Stress Guilt –“What if mom wakes up, has a lucid moment, and realizes she is in a nursing home? Grief – by accepting services some may realize the PWD will not get better, Denial – family member may expect outside services to “heal” their loved one, Fatigue – families may over-commit “Now that mom is in a nursing home, I have to check on her every day to make sure they are treating her right” Financial – impact on families (estate planning, conflicts about how to spend money)
    10. 10. Family Expectations Imagine moving a loved one into a nursing home for the first time. What would some of your expectations be from the facility providing their care?• Physical?• Physical needs met, exercise, prevention of skin breakdown and falls, safety, comfort, cleanliness, grooming, nutrition, access to medical staff• Emotional?• Hugs, attention, involvement with others, acknowledgement, respec t, connection with life story
    11. 11. Building Family Partnerships Staff Considerations • Staff is friendly and caring • First priority is the PWD (Person with Dementia) – families will see this when they catch staff caringThe goal is for family members • Recognize and address familyto begin to perceive staff as members by nameextended family so that they are • Get to know the PWD’s life storymore trusting and willing to join • Staff is willing to answerstaff in realistic expectations of questions, provide information, andcare and outcomes. Families expertisewill know staff is caring when • Should offer unrushed time to talkthey “catch” staff in the act ofcaring. Knowing their life story • Staff members can be assigned toshows that they care about the family membersperson’s • Should be able to demonstrateroutines, interests, likes/dislikes. dementia care skills in front of families
    12. 12. Building Family Partnerships• Staff can provide updates to families • Communicate twice a week • Notify family of unexpected change in condition promptly and matter-of-factly • Staff should be aware of family’s highest priority concerns upon admission so they can address them
    13. 13. Building Family Partnerships Staff should offer opportunities for involvement.• Staff should not be afraid to acknowledge difficulty with issues and ask family for advice• Staff should encourage families to communicate with each other and promote friendships• Encourage family counsel and support groups• Introduce families to each other with common interests or obstacles• Families may need some visiting ideas when their loved one is having a difficult time transitioning to their new home
    14. 14. Building Family Partnerships• How do you actively listen to a family member? • Really listen • Remind them that they are doing the best they can • Do not take it personally of the family member gets angry or upset • Do not judge • Staff can reassure families that sadness, worry, guilt, and helplessness are all normal expected emotions • Hold longer conversations in a relaxed, private area, not just in hallways
    15. 15. Building Family Partnerships • Avoid taking sides • Be supportive, yet non-judgmental • Know that every person and every family has a long history • Adult children and spouses may have unique issues • Maintain professionalism
    16. 16. Rewards of Involvement for both Staff & Families • Feeling of loyalty • Knowing they are not alone • Empowered to help others • Behaviors/moods of PWD is positively affected by integrated approach of staff and family • Staff becomes extended family and job seems like less of a job and more of a privilege • Trust
    17. 17. Example• A daughter of a • Poor response: “I resident complains to know! I can’t believe Lulu, a staff person at that your brother won’t the Happy Hearts do more for his own nursing home, that her mother.” family is just no good. • Better response: “I’m “I’m the only one who sorry. I know things cares.” can get overwhelming. Have you ever thought about attending a support group?”
    18. 18. Example• Mrs. Smith’s 87 y.o. mother has been living in your dementia care • Good responses: unit for several months. She is able Asking the daughter to to engage in simple conversations, but has difficulty observe her mother completing complex tasks. She enjoying other responds well to staff and attends a variety of activities. Each time her activities. daughter Betty visits, she insists that the staff is not doing enough for • Adapting another card her mother. She is convinced that game to suit the her mother would enjoy playing bridge. She is not satisfied with the mother’s interest, if other activities her mother seems to she is interested. enjoy and demands that the staff learn to play bridge with her.
    19. 19. Example• A woman converted late in life to a religion that disapproves of dancing, and now she wants to dance at the day center. Her adult children (not of that religion) say yes. The husband asks the staff not to let her dance. How do you responds?• The decision was made to not encourage her to dance (respecting her last known religious beliefs), but not to stop her if she wished to dance.
    20. 20. Example• For Delilah, the Demanding Daughter, whatever staff does never seems to be good enough. She seems to complain to staff, even when nothing is wrong. Her constant criticism is demoralizing for staff. How could you respond?• Often, families express grief through complaints. Be supportive and recommend resources. Support group; Alzheimer’s Association support line; Ambiguous Loss: Learning to Live with unresolved grief; try not to take complaints or statements personally.
    21. 21. Summary • Family caregivers need a best friend too • Be supportive and maintain professionalism • Create a partnership and remember the goal is to give the best care to the PWD • Sometimes your best efforts may not work. Perhaps family caregivers would benefit from another point of view such as a support group or counselor.
    22. 22. ReferencesAlzheimer’s Friend’s Approach to Dementia
    23. 23. Contact 618-222-2571Email: