During the summer of 2017, Family Caregiver Alliance (caregiver.org) hosted a 75-minute webinar with tips for being a successful caregiver, with a focus on caregiving in the context of dementia. The speaker was the terrific Sarah Dulaney, RN, with UCSF’s Memory & Aging Center.
A recording of the webinar can be found on the Family Caregiver Alliance YouTube site here:
www.youtube.com/watch?v=AHHvr3QUOVE&feature=youtu.be
Of course, one of Sarah’s tips was accepting what you cannot change. Other tips included:
* Adapt your environment to support safety and function.
* Communicate with compassion, playfulness, and respect.
* Create a routine that includes exercise and meaningful activities.
Brain Support Network volunteer Denise Dagan listened to the webinar and shared her notes earlier this month. Her notes are copied below.
Robin
Notes by Denise Dagan, Brain Support Network Volunteer
Grit, Grace, and Resilience: The Story of Successful Caregiving (Webinar)
Host: Family Caregiver Alliance
August 30, 2017
Speaker: Sarah Dulaney, RN, MS, GCNS
What is Acceptance?
* Recognize something as true
* Agree to undertake a responsibility
* Endure something without protest or reaction
* Receive or take something willingly
Between stimulus & response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. – Viktor Frankl.
This statement elicits images of many doors. We choose which one to go through.
Slide: diagram of parasympathetic nerves (“rest & digest” responses) and sympathetic nerves (“fight or flight” responses). Evolutionarily, this is how we have survived when confronted with a threat. But, the sympathetic system can be stimulated by things that are not a physical threat (like an attacker). If the body is perpetually in this high stress state, negative health outcomes are the result (high blood pressure, diabetes, metabolic syndrome, etc.). This is why we need to find ways to reduce stress as caregivers – to protect our health.
Six Ways Our Brains Help Us Survive
1. Interoception – internal signaling and perception of what our bodies need (hunger, thirst, pain)
2. Spatial orientation and navigation helps us fulfill our needs
3. Motivation and planning – using energy & focus to plan & initiate actions to meet our needs
4. Judgement and decision making – notice opportunity and distinguish danger (risk/reward)
5. Cognitive flexibility – ability to adjust actions to changing demands
6. Relational skills – ability to collaborate & coordinate with others
Those with dementia have the fight or flight response, but less ability to use these 6 skills to function in the world efficiently and effectively. They can’t accurately gauge a situation or make a good decisions about how to respond to stimuli
As caregivers, Acceptance of these limitations Enables our:
* Observation and adaptation
* Proactive planning and goal directed action
* Letting go (of those things you have no control over, and choosing how to respond to what you do have control over).
Observations – What to Look Out For (because someone with cognitive decline can’t do this for himself/herself)
* Sudden changes or signs of delirium
— Increased confusion, agitation, paranoia, hallucinations
— Not sleeping at all or sleeping all the time
— Hyperactivity or sluggishness
— Loss of ability to do things they can usually do
* Call the doctor!
– Rule out possible infection (urinary tract or respiratory)
– Other possible causes: constipation, dehydration, underlying medical issues
Other Things to Look Out For:
* Driving accidents or close calls
* Financial mistakes or exploitation
* Falls & other injuries
* Wandering & getting lost (even repeated incidents of, “Where did I park the car?”)
* Household accidents or close calls (burning food, eating spoiled food, trying to eat non-food items)
* Weight loss & dehydration (forgetting to eat and/or drink)
* Swallowing problems (choking, coughing, esp. when swallowing liquids)
Balancing Safety and Independence
Three tools that help:
* Adapt the environment to support function (move or remove furniture or throw rugs, add lighting and grab bars)
* Communicate with compassion, playfulness, and respect
* Create a predictable routine that includes meaningful activities
People with dementia don’t have skills to initiate activities on their own. They rely on caregivers to get them started. People with the apathy of Parkinson’s disease can be in the same boat and rely on caregivers to get them moving.
Tool #1
Helpful Environmental Strategies
* Reduce clutter
* Improve lighting to reduce shadows and glare (shadows can be perceived as a hole by those with dementia)
* Remove or cover mirrors (sometimes reflections are confusing or disturbing for people with dementia)
* Install adaptive equipment (grab bars, hand rails, transfer poles, ramp, stair lift)
* Remove or secure rugs (to prevent tripping, and may be perceived as a hole by those with dementia)
* Use color contrast to increase visibility and depth perception (esp. grab bars, utensils, plate, cup)
— Use solid colors, not prints, to keep the visual field uncluttered.
* Create a “Command Center” or a place, like the person’s favorite chair, where high-demand objects are nearby (cell phone, purse, water, snack, activity). Seeing these items can be calming, and prevent caregivers from fetching things constantly.
* Create “Workstations” or places where objects are organized by task (medications, meals, personal hygiene, dressing). Don’t keep non-toothpaste tubes near tooth brush, so they don’t grab the wrong tube to brush their teeth. Put items they don’t use independently in an inaccessible space. Maybe label the toothpaste tube with a cleaner label than what comes on the tube from the store.
Speaker presented before and after photos of cluttered spaces that have been cleaned up for visual clutter, tripping hazards, increased visual perception, etc.
Proper Chairs:
* Full length armrests (provide support to help push themselves out of a chair)
* Seat height that allows a person to sit with knees level to hips (about 18”)
* Seat depth 19-22 inches
* Comfortable but firm cushion
* Bright colors with bold contrast
* Room for feet underneath (a chair with legs, rather than upholstery right to the floor)
* Water resistant upholstery or waterproof seat pad
Environment Resources:
* Social Care Institute for Excellence, “The Dementia Environment at Home” 12-minute video:
youtube.com/watch?v=MRcd6xzUwKs
* This Caring Home, website from Cornell University with tips and advice for improving safety and function (falls, cooking accidents, wandering, toileting and bathing):
thiscaringhome.org/index.aspx
* Dementia Enabling Environments, website developed by Alzheimer’s Australia, with downloadable guides on how to optimize each room:
enablingenvironments.com.au/downloads.html
* Centers for Disease Control and Prevention (CDC) Fall Prevention resources for health care providers and patients:
cdc.gov/steadi/index.html
Tool #2
Compassionate Communication
* Give the person time to respond (their mental processing speed is slower than yours whether they have dementia or Parkinson’s disease)
* Listen
* Repeat yourself, if necessary – do not correct, scold, argue, or mock
* Remember they are doing the best they can
* Acknowledge their feelings
* Reassure them that things will be okay and you are in this together
* Remember your body language!
* Offer affection, if the person responds well to affection (hold their hand, rub their back, give them a hug)
* Incorporate pets and/or nature sounds to create a calm environment
Playfulness and Respect
* Laugh with the person – not at them
* Avoid ‘elderspeak’ or ‘baby talk’
* Use a matter-of-fact tone of voice
* When the person is distressed and needs help de-escalating
— Try to stay calm yourself
— Acknowledge their feelings
— Redirect the conversation – this takes practice!
— Refocus on the present moment (what are they wearing, what is the weather like, what else is going on in the room)
* Distract with another topic, a snack, music, or activity
Helpful Phrases…
* Can you help me _____ ?
* Will you just give it a try, please? (useful for getting them to a day program)
* It’s time to ____ .
* Would you like this one or that one? Just a choice of two, not more (with those who have dementia).
* It sounds like _____ . – or- It seems like _____ . (relating to their current state with empathy)
* I am sorry this is hard, we’ll get through this together.
Tool #3
Establish a Daily Routine
* Day programs are great for establishing a daily routine and giving caregivers time away from caregiving.
* Keep consistent sleep and wake times (nap no longer than 15-20 minutes around 2p or 3p)
* Have regular periods of active engagement
— Helping with chores (sweeping, folding, wiping the counter, sorting the mail, cooking)
— Arts & crafts, gardening, simple puzzles or games (Jenga, blackjack, matching games, iPad apps)
— Bathing and grooming rituals (getting your nails done or hair cut, even for men)
* Include passive engagement because they need to rest (both those with dementia and Parkinson’s)
— Listening to music or a story
— Watching TV or looking out the window
* Include exercise (walking, exercise video, Wii, dancing, etc.)
Healthy Coping Strategies for Caregivers:
1. Tune-in to yourself and others
2. Find balance
3. Try something new
S.T.O.P.
S – Stop
T – Take a deep breath (center yourself so you can be flexible and present for your loved one)
O – Observe what is going on in you (Are you stressed? What are your needs?)
P – Proceed
What Do Emotions Feel Like?
Anger, Fear, Sadness, Joy, Disgust, Surprise – Talk yourself out of fight of flight mode to handle calmly what you are presented with.
Find Balance
* Connect with other people (we are tribal. Connecting is in our genes and good for our brains.)
— Those who have social support through a crisis (of any kind) suffer less trauma from the experience.
* Notice pleasant events and share them (sharing positive events amplifies them for the sharer)
* Remember who and what you are grateful for
Dr. Bessel Van Der Kolk, “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.” Speaker is reading this and finding it important.
Try Something New, The Benefits:
* Interrupt negative thought patterns – Let go and move on
* Avoid boredom
* Help break bad habits
* Expand your world
Definitions
Grit:
* Courage and resolve; strength of character
Grace:
* The quality or state of being considerate or thoughtful
* A charming or attractive trait or character
* Ease and suppleness of movement or bearing
Resilience:
* An ability to recover from or adjust to misfortune or change
QUESTION AND ANSWER
Q. Sibling sisters where one is a control-freak and mom has dementia. How can she help the control freak and the primary caregiver?
A. It’s helpful for the caregiver to receive concrete offers rather than, “Call if you need anything,” or “Do you need anything?” Instead, “I can stay with Mom this weekend,” “I can bring dinner on Wed.,” etc. Especially offering a regularly scheduled meal, activity, chore, or errand can be very helpful. It is not helpful to make suggestions to the primary caregiver unsolicited, like “mom should drink coconut water, (or whatever),” but it is helpful to listen to the primary caregiver and let them vent their stress.
Q. What is your advice for someone who feels guilty that they could be doing more, be more present, etc.
A. Accept the things you cannot change. Caregiving is the most difficult thing you can do. Be gentle with yourself and that allows you to be kinder to the person you are caring for. Understand you will not always do everything perfectly. It is okay to set your own limits and say no where your limits are. Be engaged in every way you can manage, and accept that that is enough. Whatever you do with love is very important.
Q. Tell us more about the Care Ecosystem Study. What are the goals? What data is being generated?
A. Funded by Medicare and NIH. UCSF and Nebraska hosting the study. It is survey based data collection in the control group. The intervention group has a support team to help find resources, educate about dementia care, provide medication training, manage behaviors, advance care planning, long term care planning, etc. Publications out now about how they developed the intervention protocol, and more publications to come. Looking at quality of life for patient, hospitalization frequency and re-admittances, caregiver health, whether these interventions delay placement into long term care.
Q. Parents have dementia. One kid accepts, but other kid does not. What to do?
A. Perhaps you can have an MRI to see brain shrinkage, or neurological testing results to show sibling who doesn’t accept dementia. This can be helpful when a distant relative doesn’t see behavioral evidence of the diagnosis in brief interactions with he parent. Have the distant relative come to doctor appointments or stay overnight or over a weekend in the parent’s home to witness behavior and cognitive changes in the parents.
Q. Adult child had life planned, now parent(s) have dementia and plans are interrupted.
A. It can be very difficult when a parent is diagnosed with dementia and bring up feelings of resentment, especially if there is not a close relationship to the parent(s). Perhaps make arrangements through the parents’ doctor for others to manage their care or move them to a facility. Its okay not to accept being your parents’ full time caregiver if it is not for you financially, or personally.
Q. Thoughts on 1. A man charged with elder abuse for having sex with his demented wife, and 2. If a married person in a facility who doesn’t remember the marriage and wants to enter a new relationship in the facility where they live.
A. In general, people with dementia have the same feelings and need for love. In most facilities spouses and/or partners can have conjugal visits. The facility will manage on a case-by-case basis as their behavior impacts those around them. Someone with dementia may be able to have or continue an intimate relationship, especially with some assistance. They certainly have the capacity to choose whom they feel comfortable being intimate with.