Category Archives: Caregiving – Dementia

Family Caregiver Alliance is hosting a webinar for caregivers to those with dementia this Wednesday, August 30th, 11am to noon PT. Details are:

Grit, Grace, and Resilience:
The Story of Successful Caregiving

Caring for someone with dementia is a demanding and enduring challenge. It takes our best selves and all the support we can get from those in our communities. This webinar is a reflection on ways those who provide care can sustain their health and well-being throughout the caregiving journey.

Objectives:
* Learn why accepting the situation is important.
* Identify three tools to help balance safety and independence.
* Learn healthy coping strategies.

Speaker: Sarah Dulaney
Sarah Dulaney earned a Master of Science degree in gerontological nursing at UCSF and is certified as a Geriatric Clinical Nurse Specialist by the American Nurses Credentialing Center. For the past 14 years, Sarah has worked with adults with cognitive impairment in community, long term care and hospital settings.  The focus of Sarah’s work is on improving care delivery and support for patients with dementia and their caregivers in whatever setting they may live. She finds joy in “sharing the moment” with people with dementia.

When: Wednesday, August 30, 11 a.m. to 12 noon (PT)

Cost: No charge

Contact: Calvin Hu, [email protected], (415) 434-3388 ext. 313

Registration

This blog post may be of interest to those struggling to get someone with dementia to shower.

Many in the Alzheimer’s community will know of Bob DeMarco, who cared for his mother with AD. This July 2017 article is from Bob’s website, The Alzheimer’s Reading Room. Of course the suggestions offered apply to all types of dementia, not just Alzheimer’s. The full text is copied below.

There’s also an 11-minute podcast, which is basically Bob reading this article. On the YouTube page of the podcast, Bob lists several resources that “deepen the content” of the podcast/article. I’ve copied below those additional resources.

Robin

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www.alzheimersreadingroom.com/2017/07/how-to-inspire-a-dementia-patient-to-shower.html

How to Inspire a Dementia Patient to Shower
The Alzheimer’s Reading Room
By Bob DeMarco
July 17, 2017

Getting an Alzheimer’s patient to shower can be difficult. In order to accomplish this mission you will need to learn how to be a guide, how to use bright light, and how to use positive reinforcement.

Thousands of caregivers and dementia professionals have used these techniques and they work.

My mother usually resisted when I asked her to take a shower – for years. When she occasionally said something other than NO, I looked to the heavens as if it was a reward.

It took me quite a long time to figure out what to do and how to properly motivate my mom so she would take the shower without resistance.

1. Constant positive reinforcement about the positive effects of being clean.

My mother would usually take her shower around 3 in the afternoon. I gave up trying to get her to take her show in the morning because she wouldn’t do it.

During the course of the day I would start setting the stage for the shower early in the morning and throughout the day.

An hour before her shower, I would take my shower and then come out with my head still wet and my face clean shaven and start extolling how great it felt to be clean.

I would get my mother to touch my face and show her how smooth it was. As she was touching my face I would say – smooth a few times.

Eventually she would say smooth, or “smooth as a baby’s butt”. This would give both of us a good laugh.

I would also get her to touch my wet hair. Then I would say – clean. I would say clean a few times as she touched it.

I would then tell her how great it felt to be clean. Positive reinforcement about the virtues of being all nice and clean.

Please Note – This was designed to fix the idea of a shower in her brain. All of this was designed to set the stage for Dotty’s shower that was coming soon.

I was trying to set a pattern leading up to the shower, and then a specific pattern when it came time to take the shower.

Establishing patterns is one of the only ways I discovered that worked when it came to establishing consistent behavior with someone living with Alzheimer’s disease.

I am convinced that trying to do the same thing, at the same time, every day is very helpful in Alzheimer’s caregiving.

2. Prior to the shower I tried to make sure my mother was sitting in bright light.

I would sit her next to a window – in the kitchen usually do the trick. I learned that bright light can be mood altering when used effectively with dementia patients.

Put it this way – bright light, bright mom.

Before shower time, I always talked to and engaged my mother. I would resist the temptation to sneak up on my mother and then announce – time to take a shower. This doesn’t work, and it never worked for me.

Singing can be a good way of engaging a dementia patient and getting their attention. I learned my mother was always willing to sing Shine on Harvest Moon.

It became even easier after we obtained our repeat parrot Harvey. Now the three of us could sing together. This usually delighted Dotty.

I understand that Alzheimer’s patients often say NO when asked to take a shower. Sometimes my mother would say, “I already took my shower”. This was amusing because she was still sitting in her pajamas.

Rule to live by: Never correct an Alzheimer’s patient if they say they already took their shower.

Rule to live by: Never try to explain to them the importance of taking a shower – like good hygiene.

Ever hear the saying “loose lips sink ships”? Explanations and lots of words will sink your caregiving effort every time.

3. When it comes time to take the shower think of yourself as a guide.

You are going to guide your loved one to the shower by taking their hand. Of course, you will already have given them a nice smile, and received a nice smile back before you start to take action.

The weapons in your caregiver arsenal: the smile, your hand, and the most important of them all – positive reinforcement.

Here is one simple way to get someone living with Alzheimer’s to take a shower in my opinion. I learned this as a freshman in college in Psychology 101. Let’s call this Pavlov’s dog and the shower.

How to use the zinger. The shower must always lead to something the dementia patient wants or enjoys. In the case of Pavlov’s dogs they rang a bell when the dogs would eat. Eventually, they would just ring the bell and the dogs would salivate. This is known as a conditioned response.

When I got mom up for the shower I wouldn’t say a word. I would stick my hand out and wait for her to take it. And away we would go.

When she asked where we were going I would hold her hand and walk her toward the bathroom.

At this point I fire in the zinger. After you take your shower mom you will get a nice snack.

I usually said potato chips because they were her favorites. Positive reinforcement before the shower, BIG positive enforcement after the shower. For many of you, ice cream or chocolate should do the trick.

Two points here. One, mom gets the positive reinforcement after every shower, the reward so to speak – the potato chips or ice cream.

Two, I am involved with mom all the way. I don’t say you need a shower and then wait for her to go take the shower. I assist her right up to the door of the shower.

You have to be actively involved with a person living Alzheimer’s in everything they do. Once you get the hang of being actively involved you will find and learn – that it gets easier to guide your loved one and get them to do what you would like them to do.

Resist the temptation to be a parent. You are dealing with an adult with dementia, not a child.

Resist the temptation to be the boss. Instead be a guide and lead with a smile and your hand, palm turned up. Offer your hand to your loved one.

Always think positive and endeavor to find new and better ways to introduce positive reinforcement into the equation.

If you want your loved one to take a shower every day establish a pattern. Make sure the communication and activity leading up to the shower are positive and that you are engaged with the patient before guiding them.

Extol the virtues of being clean and how wonderful it feels. Get all happy about it – show your enthusiasm.

Make sure the immediate aftermath of the shower is positive. Use potato chips, or ice cream, or a trip out the door (this really worked well for me).

Don’t worry about being so happy you can’t see straight. Once you get this technique down you will be so happy you won’t believe what it feels like.

Don’t worry, you can do it. Might take some practice and patience, but it will happen.

List of resources on the YouTube page for the 11-minute podcast:

www.youtube.com/watch?v=myAG_rGIli4&feature=youtu.be

The following articles deepen the content available in the Podcast.

5 Tips How to get an Alzheimer’s Patient to Shower – http://bit.ly/RIKk4Q

Dementia care meet meanness with kindness – http://bit.ly/2u3qt4y

How to Change Patterns of Behavior in Alzheimer’s and Dementia Patients – http://bit.ly/2cfoh56

The Importance of Bright Light in Dementia Care – http://bit.ly/aoYGZg

Should you correct someone with dementia – http://bit.ly/2u3qt4y

How the Smile is a Powerful Communication Tool in Dementia Care – http://bit.ly/2fOBP59

Alzheimer’s Care Be a Guide – http://bit.ly/2j5ej5v

The Best Way to Find Solutions to the Problems that Caregivers Face Each Day – http://bit.ly/alzheimers-answers

Someone in our local support group recently sent me this link to US Dept. of Health and Human Services’s curriculum for physicians (especially primary care physicians) and healthcare professionals (social workers, psychologists, pharmacists, emergency department staffs, dentists, etc.) on dementia. Here’s a link to the curriculum:

Training Curriculum: Alzheimer’s Disease and Related Dementias
Health Resources and Services Administration (part of Dept of HHS)
bhw.hrsa.gov/grants/geriatrics/alzheimers-curriculum

Included are excerpts on:
* diagnosing dementia and the value of early diagnosis
* general strategies for managing behavioral and psychological symptoms
* managing apathy
* treating sleep disorders
* home safety considerations
* hospice care

Robin

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Diagnosing Dementia (Module 2)

Key Take-home Messages
* There are several brief validated tests that can detect dementia.
* Dementia is a group of symptoms and not a part of normal aging.
* Dementia is caused by many diseases and conditions affecting the brain. The most common type of dementia is Alzheimer’s disease, followed by vascular dementia, dementia with Lewy bodies, Parkinson’s disease dementia, frontotemporal degeneration, and mixed dementia.
* Early diagnosis of dementia and its underlying causes allows for appropriate medical management, access to resources and clinical trials, and future planning with input from the persons living with dementia (PLwD).
* Use of biomarkers for Alzheimer’s disease is an emerging field – brain amyloid PET scans are available with FDA-approved radioactive tracers.

Value of Early Detection and Diagnosis
* Diagnosis of dementia is life changing.
* Early detection and diagnosis affords many benefits to PLwD and their care partners:
– Involves PLwD in decision-making
– Can help preserve functioning
– Allows optimization of other medical conditions
– Allows for long-term care planning
– Allows for development of interprofessional care team (Johnson et al., 2013)
* Need to balance benefits of routine screening of asymptomatic patients and early detection against costs of routine screening and early diagnosis.
* Currently, there is insufficient evidence as to the benefits or harms associated with routine screening for cognitive impairment in older adults.
* Early cognitive impairment may have treatable components.
* Medicare covers a free Annual Wellness Visit for every beneficiary.

When to Consider Dementia in a Differential Diagnosis
* Dementia is an umbrella term encompassing many symptoms that together interfere with daily functioning.
* Dementia often is undetected in primary care setting.
* PLwD may not be aware of or raise issues regarding cognitive impairments.
* Dementia should be considered part of differential diagnosis if:
– Symptoms of memory difficulty interfere with daily functioning.
– Unexplained functional decline or new onset psychiatric symptoms are evident.
– Personal hygiene deteriorates.
– There is sudden difficulty adhering to a medication regimen.

Treatable Conditions Causing Cognitive Impairment
* Many treatable conditions can cause cognitive impairment.
* 3D’s of geriatric psychiatry: Dementia, delirium, depression.
* Others:
– Vitamin deficiencies
– Endocrine disorders
– Infections
– Diseases
– Drug/alcohol abuse
– Sleep disorders
– Brain tumors/lesions

Understanding Early-Stage Dementia for an Interprofessional Team (Module 5)

General Strategies for Managing Behavioral and Psychological Symptoms of Dementia (BPSD)
* Patient engagement: contributes to greater sense of well-being
* Physical activity: can improve cognitive thinking, physical fitness, and mood; promising evidence that physical activity programs may improve ability to perform activities of daily living
* Communication: allow person living with dementia sufficient time to respond; use simple commands; use a calm voice; avoid harsh tones and negative words; offer no more than two simple choices; help person find appropriate words for self-expression; lightly touch the person to provide reassurance if upset
* Cognitive stimulation: evidence of some benefit to persons with early- to middle-stage dementia; stimulate thinking, concentration, and memory in social settings. Reminiscence therapy.
* Sensory stimulation: music therapy; white noise; art/craft therapy; bright light therapy
* Environmental changes: remove clutter; use labels and visual cues (signs, arrows pointing to bathroom)
* Task simplification: break tasks into simple sets; use cues (verbal, tactile) or prompts at each stage; create structured daily routines.
* Other interventions being investigated include animal-assisted therapies, massage, reflexology, herbal supplements, etc.

Managing Memory Impairments and Executive Dysfunction
* Provide cues or prompts.
* Address repetitive questioning:
– Respond with calm reassuring voice.
– Use calming touch for reassurance.
– Structure with daily routines.
– Use distraction and meaningful activities.
– Inform patient of events only as they occur.
* Address difficulties with IADLs.

Mood Disturbances: Addressing Apathy
* Apathy is a common behavioral disturbance in all types of dementia, across all stages of dementia. Apathy is commonly reported by family members and worsens over time. Prevalence increases with increasing cognitive impairment. Prevalence differs across different dementias. It contributes to poor quality of life for PLwD (persons living with dementia) and care partners.
* It is distinct from depression and does not necessarily coexist with other mood disturbances.
* Nonpharmacological management may reduce apathy:
– Engaging the person living with dementia
– Activity
– Sensory stimulation
– Environmental changes

Providing Support to the Care Partner
* Help the care partner recognize when the person living with dementia has an unmet need. What is the relationship of the PLwD (person living with dementia) to the care partner?
* Zero in on troubling behaviors of the PLwD. What is the behavior that concerns the care partner and what is it related to? Does the behavior need to change or can the care partner live with it? If it needs to change, what can be done?
* Utilize care partner strengths to see how many potential solutions can be found.
* Help the care partner recognize the importance of self-care.

Addressing Care Partner Issues
* Care partner roles depend on stage and type of dementia and where the PLwD resides (home or institutional setting).
– Early-stage dementia: Care partners provide assistance with transportation and housekeeping.
– Middle-stage dementia: Care partners continue to aid and assist with mobility, ADLs, and protection/safety.
– Late-stage dementia: Care partners provide personal care of the PLwD and decision-making.
* Caring for PLwD, though rewarding and gratifying, can be stressful and difficult; caregiving responsibilities are increasingly time-consuming. Care partner requires support, education, guidance in providing appropriate care for PLwD as well as self. Interprofessional team can provide education, identify support services to ensure care partner’s needs are recognized and addressed.

Understanding the Middle Stage of Dementia for the Interprofessional Team (Module 6)

Behavioral and Psychological Symptoms of Dementia (BPSD)
* Common symptoms include mood disorders, sleep disorders, psychotic symptoms, and agitation.
* These are predominantly caused by progressive damage to brain.

The DICE (describe, investigate, create, evaluate) Approach
(see slides)

Treating Sleep Disorders in Dementia
* Nonpharmacologic interventions:
– Sleep hygiene
– Sleep restriction therapy
– Cognitive behavioral therapy
– Light therapy
– Continuous positive airway pressure therapy (CPAP) for sleep apnea (OSA)
* Melatonin/melatonin agonists
* Medications (especially sedative-hypnotics or antipsychotics) can have significant adverse effects.

Home Safety Concerns
* Care partner and dementia care team need to assess safety of the PLwD in the home throughout course of dementia. Problems can arise during early-stage and become more pronounced and possibly dangerous during middle-stage dementia.
– Is PLwD able to continue living at home in middle-stage dementia?
– Is PLwD able to be left alone?
– What needs to be done if the answers are NO?
* Home assessments focus on fall prevention, bathing/toileting safety, kitchen and laundry-room safety.
* Strategies for eliminating fall hazards include keeping floors dry and removing tripping hazards, like small toys or animals.
* Other accommodations include use of alarm bells and safety mechanisms on windows, doors and appliances, monitors.
* Guns and ammunition should be secured separately.

Palliative and End-of-Life Care for Persons Living with Dementia (Module 12)

Key Take-Home Messages
* Persons living with late-stage dementia should be considered candidates for hospice care.
* Hospice care is a Medicare benefit that requires forsaking active aggressive therapeutic treatment.
* As dementia progresses and quality of life decreases, the value placed on living longer by the person may change.

Manifestations of End-Stage Dementia
* Dementias are progressive, incurable illnesses.
* Persons living with most types of end-stage dementia have profound memory deficits, minimal verbal abilities, cannot ambulate, are incontinent, and are dependent on others for activities of daily living (ADLs). These manifestations of end-stage dementia are similar for persons diagnosed with Alzheimer’s disease, Lewy body dementias, or vascular dementias. Persons living with some forms of end-stage frontotemporal degeneration (FTD) have similar signs and symptoms but a faster progression to death.
* The most common clinical complications associated with advanced dementia are eating problems, febrile episodes (fevers), and aspiration pneumonia.
* Risk factors for a faster decline include greater functional disability, extrapyramidal symptoms, a history of falls, arterial coronary disease, stroke, and urinary incontinence.
* PLwD (people living with dementia) should undergo more frequent monitoring during the end stage, especially if they are on medications.

End-of-Life Goals
* End-of-life goals may differ for PLwD vs. care partners.
* Goals may be curative or comfort-based.
* It is important to educate all about terminal nature of dementia.
* End-of-life goals for PLwD encompass many issues.
* Need to perform risk/benefit analysis regarding value of hospitalizations in end-stage dementia.

Behavioral and Psychological Symptoms of End-Stage Dementia
* Behavioral and psychological symptoms of dementia may become more prominent in advanced dementia.
* New onset or acute behavioral problems are usually indicative of a new problem.
* Agitation requires prompt attention and evaluation; management should begin with nonpharmacologic interventions.
* PLwD should be assessed for sleep problems, delirium, and pain.

Distinguishing Palliative Care from Hospice Care
(good slide)

Role of PEG Feeding Tubes in Advanced Dementia
(good slide)

When to Consider Hospice Care
* Hospice criteria for dementia are based on progression of Alzheimer’s disease.
* There are many signs and symptoms of end-stage dementia that suggest consideration of hospice.
* PLwD who cannot walk, bathe, or dress independently may be closer to hospice enrollment.