Improving the Quality of Life for Patients with Advanced Dementia

7/31/2019 Improving the Quality of Life for Patients with Advanced Dementia

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March 200

NewsLine

An estimated ve million Americans have dementingdiseases, one million of them in advanced stages Dementiarefers to the progressive loss of memory and other cognitive

functions, often but not always resulting from illnesses such asAlzheimers disease.

NHPCO estimates that 10.3 percent of patients who died in 2006while under hospice care had dementia as their primary diagnosisThis estimate is based on data submitted by 603 hospices inresponse to NHPCOs annual National Data Set survey1 An unknownnumber admitted with other diagnoses such as cancer, organ failureor general debility may have had dementia as a comorbidity or

secondary diagnosis. Whats more, the Centers for Medicare andMedicaid Services reports that 77,577 Medicare hospice patients werediagnosed with either Alzheimers disease or Senile Dementia in 2005(up from 31,797 in 2000). This growth in the number of Medicarehospice patients with the disease, in addition to the number of non-Medicare hospice patients, suggests a total annual hospice dementiacaseload of 100,000.

Estimating life expectancy, recognizing when people with dementiahave an appropriate prognosis for hospice care, and successfullyobtaining coverage for their care from Medicare can pose signicantchallenges NHPCOs Dementia Work Group is exploring thesechallenges, promoting additional prognostic research, and engaging in

dialogue on coverage issues with Medicare scal intermediaries.A new report from NHPCO suggests, however, that hospices canwork within the current system to open doors for eligible patientsand provide them with the palliative care services they need anddeserve. The 27-page report, Caring for Persons with Alzheimersand Other Dementias, is lled with concrete information on providinghigh-quality, evidence-based care and helping to maximize the qualityof life of these patients and their families It also features examplesof hospices that are working effectively within existing eligibilityguidelines (Members can download a copy of the repor t, free ofcharge. See page 46.)

Improving the

Quality of Life

for Patients with

Advanced DementiaBy Larry Beresford

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Hospice Care Can Makea DifferencePatients with dementiawho qualify for and are

enrolled in hospice care aretypically no longer able toexpress their end-of-life carepreferences verbally Forsuch patients, it is importantto look for guidance fromadvance directives or fromtheir familys surrogaterepresentations of theirvalues, especially when itcomes to clarifying importanttreatment decisions relatedto feeding tubes, antibiotics,

rehospitalizations and the like.

But patients with advanceddementia may still expressthemselves through facialexpressions, body languageand how they react atmeals or bathing timeschallenging their caregiversto work with these demonstrated preferencesrather than trying to force a meal or a bath onthem using traditional language and interventionsEven if it takes a little longer, there are techniques

that can be used to recognize, interpret andaccommodate those behaviors in order to enhance,rather than detract from, the persons quality oflife

Most of all, the NHPCO report argues that hospicesneed to recognize that their skillsin symptommanagement, psychosocial and spiritual support,and bereavement counselingcan be extremelyvaluable to these patients and families Theseindividuals are in our communities today, eligiblefor hospice care and, in some cases, already onour caseloads

Hospices are encouraged to seek out moreinformation about the specic needs of thesepatients and provide targeted education to thestaff members who care for them In somecases, it may also be appropriate to consider thedevelopment of specialized services, teams, orprograms for patients with advanced dementia

For hospices, advanced dementia is the ultimatechallenge, but also the ultimate opportunity toshare the very best that is in our hearts and mindsas caregivers Strategies to promote and enhancequality of lifeeven when the patient is close to

deathare the essential workof hospice teams But weneed to recognize that thelife of a person with dementiahas value and the treatment

he/she receives can havesignicant impact on his/herlife, for better or for worse.

Developing SpecializedDementia ServicesSome leading hospiceshave developed specializedprograms for dementiapatients, using a varietyof individualized responsesappropriate to their

particular settings, oftenin partnership with localchapters of the AlzheimersAssociation They have foundtremendous responses totheir specialized dementiaprograms in the elevatedcondence and jobsatisfaction of their staff

and volunteers, in the reactions of long-termcare facilities, community physicians and otherpartners, from the public and, most importantly,from patients with advanced dementia and their

families

One of the more impressive examples comesfrom Beacon Hosp ice, headquartered in Boston,Massachusetts, with 20 ofces across NewEngland. In 2005, the organization began to assesswhat its teams were doing to enhance qualityof life and preserve dignity and personhood forend-stage dementia patients It made a majorcommitment to identifying and sharing bestpractices with its staff A one-year explorationof these issues by a work group of about 20membersrepresenting different ofce locations

and disciplinesled to the development of a menuof optimal, evidence-based interventions.

The program is called Deep Harbors, inspiredby Beacon Hospices lighthouse logo and thenautical theme in its publicity materials, reportsCEO Betty Brennan, We had the objective ofdeveloping a program that would create value forthese patients, but also bring value to our ownstaff to feel more rewarded in providing the careWe recognized that it was difcult to measurethe value of our services for these patients, butwe went into this process saying there has to be

something better

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Hospices need

to recognize tha

their skillscan b

extremely valuab

to these patient

and families.

Certain topics came up again and again in explorations of the medicalliterature and interviews with local experts in dementia and geriatricsEventually it was necessary to distill this broad dialogue down to amanageable menu of interventions, chosen based on their validation in theliterature, feasibility of implementation by the hospice, and opportunitiesto involve all members of the hospice team The work groups initial menuincluded four broad intervention areas aimed at enhancing quality of life forend-stage dementia patients and their families:

Music therapy

Therapeutic touch

Advanced feeding techniques

Pre-death bereavement support

A full-day training curriculum was developed to introduce the fourintervention areas, along with a four-hour competency certicationprocess. The hospices expert consultants helped teach the curriculum,which was offered at multiple locations and times for the convenienceof staff. Required certication for all agency staff (450 at the time ofroll-out in January 2006), including ofce staff, has been monitored forcompliance New hires are oriented to the same content

Hospice of the Western Reserve (HWR) in Cleveland, Ohio, offersanother example of an agency-wide response to advanced dementiaIn the Cleveland area, with its aging community, we were seeing ourdementia numbers increase, particularly in our nursing home program,reports Bridget Montana, HWRs chief operating ofcer. At the same time,our counselors were asking us how to make their visits with dementiapatients richer and more engaging. They wanted our help,feeling that they werent contributing much of value

The agency convened a multi-disciplinary committee tostudy the issues of dementia care, and its membersspent nine months attending professionalconferences and reviewing hundreds of journal

articles and other sources of expertise As withBeacon Hospice, a few key themes emerged.These included:

Understanding and assessing pain in peoplewho cant communicate verbally;

Distinguishing dementia from similarsymptoms of delirium, which may bereversible;

Finding ways to manage difcultbehaviors by non-pharmacologicalmeans; and

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Placing a greater emphasis on making everyinteraction with dementia patients deliberateand purposeful

The planning group agreed that the humanconnection between hospice caregivers andpatients with dementia is one of the mostimportant aspects of the care provided HWRsphilosophy of person-centered care afrms

and honors the value of the person, regardlessof severity of cognitive impairment It alsorecognizes the need for creativity, exibility, andattention to the emotional needs of patients

Based on what we learned from the literature,we developed a teaching curriculum for person-centered hospice care, regardless of whetherthe patient can communicate verbally, Montanasays A basic four-hour course was offered to allclinical staff, with additional content for nurses.Patient care volunteers were trained in the basicsof dementia and were given activity bags with

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Larr y Beresford is a freelance writer w ho has

authored numerous articles on end-of-lifecare. He can be reached at [email protected].

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sensory stimulation tools to help them in theirwork with patients Expressive arts therapistsoffered in-services to hospice teams and shareda screening tool they developed to assist indetermining when patients could benet from art

or music therapy

These are just two of theprograms highlighted in the27-page NHPCO report

Caring for Persons withAlzheimers and OtherDementias Members candownload a copy of thereportfree of chargeVisit nhpco.org/accessand scroll to Dementia

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Improving the Quality of Life for Patients with Advanced Dementia