Living in the Community with a Diagnosis of Dementia Tara A. - - PowerPoint PPT Presentation

Living in the Community with a Diagnosis of Dementia

Tara A. Cortes PhD,RN,FAAN Executive Director and Professor The Hartford Institute for Geriatric Nursing, NYU College of Nursing 2014 Primary Care Symposium June 9, 2014

Alzheimer’s Disease (AD)

AD is different than other chronic diseases

– There is no proven way to prevent it or modify its progression – It is strongly related to age

• The rate of new cases doubles in each five year age

group after age 65

• About 1 of 10 people over age 65 have AD
• Almost 1 of 2 people over age 85 have AD

– There is a need for supportive social care as cognitive abilities are lost resulting in caregiver burden – There is a financial burden due to high cost of medical care

Burden of Alzheimer’s Disease

• Medical costs

– Medications, doctor visits, hospitalizations – Almost all a burden to Medicare – Medicaid picks up direct costs for providing long term care in a nursing home or assisted living as people outlive their assets

• Taxpayers become the payer

Burden of AD

• Unpaid caregivers reduce the direct cost
• f long term supports

– Indirect costs

• Value of services provided by unpaid caregiver

– replacement costs if those services had to be purchased – Caregiver reduces paid time in the workforce

• Recent estimates of providing care for all

patients over 70 is $157-$215 Billion estimated to rise to $1.2- $1.6 Trillion in 2040 (Hurd et al.)

Memory and Getting Older

Normal Aging

– As people get older they may forget things and remember them later

• Forgetting the name of a person or object
• Not knowing the day of the week
• Sometimes needing help to change a setting on a

TV or phone

• Sometimes having trouble determining a tip
• Trouble balancing a checkbook

Dementia

• Dementia affects about 5% of individuals 65 and
• lder
• Dementia describes the loss of memory and

thinking that stops a person from doing their normal activities

• AD is the most common type of dementia

– Caused by changes that begin in the part of the brain that controls memory – These changes spread to other parts of the brain

• Dementia can also be caused by vascular

changes or other diseases, but AD is the cause of 60-80%

Dementia

• Dementia is common in acute care and post-acute care facilities

and their transitions, but under-recognized.

• Symptoms of dementia can vary greatly, at least 2 core mental

functions must be significantly impaired to be considered dementia.

• Individuals with clinically diagnosed dementia have clear cognitive

loss in two or more intellectual domains but almost all individuals with Alzheimer's disease demonstrate short-term memory impairment.

• Personality changes can become evident in the early stages of

dementia.

• Individuals with dementia may show symptoms of depression at

any stage of the disease. Depression is treatable in the latter stages of dementia.

Normal Aging and Alzheimer’s Disease

Typical Age Related Changes

• Making a bad decision
• nce in awhile
• Missing a monthly

payment

• Forgetting which day it is

and remembering later

• Sometimes forgetting

which word to use

• Losing things from time to

time Alzheimer’s Disease

• Poor judgment and

decision making

• Inability to manage

budget

• Losing track of the date
• r season
• Difficulty having

conversation

• Misplacing things and

being unable to retrace steps to find them

Alzheimer’s Disease

• AD progresses from mild to moderate to

severe cognitive decline

• AD is a chronic disease that can go on for

many years.

• The usual time from diagnosis to death is

between 8 and 15 years.

• There is no cure but there are treatments

that slow down the progression of the symptoms.

Mild Cognitive Impairment (MCI)

• A person’s memory and thinking changes but

they can still do all their normal activities

• Changes are noticed over several months
• Changes may include skills like:

– Inability to balance check book – Trouble making change – Trouble choosing a tip – Searching for common words

• The person continues normal ADLs such as

driving, cooking dressing, shopping

Moderate Cognitive Impairment

• Difficulty with decision making
• Inability to recall own address or

telephone number

• Confused about where they are
• r what day it is
• Unable to select appropriate

clothes for season or occasion

• Still independent in feeding

and toileting

Severe Cognitive Impairment

• Person may show personality changes and

mood disorders, or delusions

• May lose awareness of recent experiences

and surroundings

• Distinguish familiar and unfamiliar faces but

have trouble remembering the name of a spouse and caretaker.

• Need help dressing, toileting
• May wander or become lost
• May show compulsive behaviors like hand

wringing or shredding tissues

Late Stage Alzheimer’s Disease

• Individuals no longer respond to environment
• Cannot carry on conversation

– speak in single words or phrases

• Need help with ADLs

– eating, bathing, toileting

• May lose ability to smile, sit without support
• r hold head up
• Swallowing is impaired
• Muscles grow rigid

Remember

• It is difficult to place a person with

Alzheimer's in a specific stage as stages may overlap.

• Although usually considered a chronic

disease of older adults, about 5-10% of people diagnosed with AD are <65 years of age.

• Payment for care of this progressive disease

can be challenging.

• People with AD are at risk for abuse and

neglect by others and themselves.

Concerns for Families and Loved Ones

• Payment resources
• Elder abuse
• Caregiver burden
• Resources for assistance
• End of Life planning

Payment resources

• Medicare

– Does not pay for long term care – Pays for office visits, hospital care, short term rehab, home care for 60 days post hospital – Pays for hospice

• Medicaid

– Pays for long term care in home or nursing home – Must met income requirement

Elder Abuse

• People with Alzheimer’s Disease are particularly

vulnerable abuse and mistreatment

• Caregivers — both family and professionals — are

most often the abusers of older people.

– In many cases, stress and frustration may provoke unintentional violent

• There are different kinds of abuse
• One sign of abuse may not be indicative, but repetitive

signs must be taken seriously

• Elder Justice Act

– Part of the Affordable Care Act – Provides funds and grants to investigate sysematic abuse and stop it

Caregiver Burden

• Caregivers of persons with Alzheimer’s

disease and other dementias shoulder a particularly heavy burden of care.

• Compared with other caregivers, the type
• f care they provide is more physically and

emotionally demanding and more time- consuming, and it takes a heavier toll on work and family life.

Caregiver Burden

• Family relationships change when

Alzheimer’s strikes and intense caregiving

• ccurs regardless of living arrangements.
• Adult children are most often the primary

caregiver, even when a spouse is present.

• Most family caregivers do not live with the

person for whom they are caring, but they still provide a great deal of care and support, even when their loved one is in a residential care facility.

Caregiver Burden

• Alzheimer caregiving is about much more

than activities of aily living (ADL).

• Caregivers face special challenges arising

from their loved ones’ cognitive impairment, and even more than other caregivers, they are addressing basic health care needs and struggling to negotiate the care system.

• They are looking for information and help in

carrying out these broader responsibilities.

Facts

• 65% of caregivers provide the most difficult kinds of

personal care – e.g. bathing, feeding and dealing with incontinence -- tasks that are even harder to do for a person with dementia who may be confused, disoriented, and unable to assist in even these most basic activities of daily living.

• They spend more hours a week providing that care than do
• ther caregivers. Nearly 1 in 4 provide what the survey

defines as “constant care” – committing 40 hours a week or more.

• They do so for a long time -- 71% for more than a year and

32% for five years or more.

• Many spend substantial out of

pocket expenses

• Many work reduced hours or

leave their jobs to provide care

• In home care is expensive

More Facts

• 20% to 30% of caregivers report they are prone to

depression, grief, fatigue, and physical health problems

• There is an increased use of alcohol, smoking and other

drugs are not uncommon, as are poor health behaviors such as inadequate diet, exercise, and sleep.

• Additional risks are a suppressed immune system leading to

frequent infection and an increased risk of heart disease, diabetes, stroke and premature mortality.

• Caregivers experience chronic conditions at nearly twice the

rate of noncaregivers.

• Although individuals who take on the caregiving role are

generally physically healthier than those who do not, evidence suggests that at least one in ten caregivers report caregiving as the cause of their physical health's deterioration.

Reducing Burden

• There is very little substantial research on

reduction of stress in caregivers

• Health professionals need to educate caregivers
• n care of older patients

– Need to know when to call for help

• The patient and caregiver must be perceived as a

part of the healthcare team

– Participate in health care plan – assure them that guidance is available to help in managing patient – Abandonment by the professional is most damaging as it makes the caregiver feel powerless

Reducing Caregiver Burden

• The Reducing Disability in Alzheimer’s Disease (RDAD)

program provides exercise training for people with Alzheimer’s disease who live at home and simultaneous training for their family caregivers about how to manage behavioral symptoms.

• The program is intended to reduce behavioral symptoms and

depression and improve the person’s physical functioning.

• The RDAD intervention is 12 sessions over 11 weeks; each

session is one hour in length. It could be done in-home or in-

• facility. It is designed to be delivered by professionals (not lay

leaders) with experience guiding and supervising exercise activities in older adults.

• Persons with dementia need to be living with a family

caregiver or in a residential facility with caregiver staff that could guide and supervise the RDAD intervention.

Other Resources

• Local support groups
• Medical Day programs
• PACE programs
• Certified home health agencies

– Medicaid – Hospice

• Assisted living or nursing home
• Alzheimer’s Association

– 1-800-2723900 24 hour helpline – www.alz.org

End of Life Planning

• More difficult when a patient has dementia
• Includes a spectrum of decision making
• Capacity
• Health Care Proxy
• POLST

Dementia and Capacity to Create an AD

• If a patient with dementia can state the importance or

implication of a choice on their future health state, they usually have the capacity to execute an AD

• The ability to appreciate consequences is a highly valued

standard for determining capacity to execute an AD

• The capacity needed to name a proxy (e.g. execute a

HCP) is less than that needed to execute a LW (Mezey, et

al, 2000)

• Patients with early dementia typically can safely execute a HCP
• Patients with mild to moderate dementia typically lack

capacity to execute an AD

• However, these patients may be able to make or at least

participate in some treatment decisions

Determining When a Patient Lacks Capacity

Decision making capacity is a clinical determination

– Competency is a legal determination – Criteria as to who can determine capacity varies across states

Determining When a Patient Lacks Capacity

A patient lacks the capacity to make health care decisions when they cannot:

– Understand and process information about their diagnosis, prognosis, and treatment options – Weigh the relative benefits, burdens and risks (e.g. consequences) of a care or treatment option – Apply a set of values to the analysis – Arrive at a consistent decision – Communicate the decision (Roth et al, 1977).

Standards for Proxy Decision Making

1. Voicing what the person said they would or would not want

• Asking the proxy to make a decision the person said

they would make for themselves

2. Making a decision that is in the person’s “best interest”

• Ask the proxy if the patient made prior statements
• Ask the proxy to make a decision based on what the

patient would want if able to choose

3. Making a decision that a “reasonable person” would make

Health Care Proxy

• Empowers a patient to name a proxy (surrogate) to

make health care decisions if they lack capacity

• Recognized in all states
• A proxy can legally interpret the patient’s wishes to fit the

actual situation – Thus, more flexible than a living will – Presumes that proxy knows the patient’s wishes

• Not restricted to life sustaining treatment decisions
• “Springing proxy”: can make decisions prn
• Family consent laws
• Web sources for HCP documents: google health care

proxy forms and your state

POLST

• Practitioner Orders for Life Sustaining Treatment
• A set of orders to give seriously ill or frail older

adults more control over their end-of-life care

• Signed by MD/NP and patient/surrogate
• New Jersey law requires that medical orders in a

POLST be followed and provides immunity from civil or criminal liability to those who comply with it.

• Complements Advance

Directives which appoints a legal healthcare decision maker

POLST Document

• Goals of care
• Preferences regarding resuscitation
• Preferences regarding intubation
• Preferences for artificially administering

nutrients

• Other preferences regarding medical

interventions that are unique to that patient

Palliative Care and Hospice

Palliative Care

• Empowers a patient to name a

proxy (surrogate) to make health care decisions if they lack capacity

• Recognized in all states
• A proxy can legally interpret the

patient’s wishes to fit the actual situation – Thus, more flexible than a living will – Presumes that proxy knows the patient’s wishes

• Not restricted to life sustaining

treatment decisions

• “Springing proxy”: can make

decisions PRN

• Family consent laws
• Web sources for HCP documents:

google health care proxy forms and your state

Hospice Care

• Defined benefit under Medicare

and most insurers

• Must have less than 6 months to

live

• Must forgo curative care for

illness that patient is admitted to hospice for

• Pays for all care related to

illness including meds, equipment

• Bereavement care included for

family post-death

• Can occur at home, nursing

home, or time-limited stays in hospital

PCP Management of Symptoms

• Advance Care Planning: determine when to

begin palliative care – Medicare billing allowed for palliative care evaluation and management

• Determine patient’s values related to quality of

life

• Have patient complete an advance directive
• Initiate symptom management
• Move to Hospice

Policy Issues

• It is essential that care for people with

Dementia and AD be a policy priority

• Economic burden on our system
• Emotional, physical and financial burden
• f caregivers
• The President has placed AD as a national

agenda item

• HHS is focused on AD with a national plan

to have a cure by 2020

Public Policy Recommendations

• Support the development of an essential

infrastructure to serve family caregivers with a national accessible support system

• After grant funding by Administration on Aging

ends for successful programs, CMS should continue funding through waiver mechanisms

• The CLASS Act (Community Living Assistance

Services and supports Act) under the ACA should be re-introduced to support the development of a new national long term insurance program to include caregiver support, education and training.

There are only four kinds

• f people in this world.

Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregiving.

• Rosalyn Carter