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Dementia care. Part 3: end-of-life carefor people with advanced dementiaEmma Ouldred, Catherine Bryan

AbstractEnd-of-life care issues for people with advanced dementia have onlyrecenty bee n addressed in guid ance. There appear to b e barriers toaccessing good palliative care for people in the terminal phase of thedisease. The reasons for this are multifactorial, but m ay be attributedto factors such as dementia not being recognized as a terminaldisease like cancer, problems in recognizing the symptoms of terminaldementia, and decision-making conflicts between family caregivers andother health and social care providers. This article highlights co m m onsymptoms of advanced dementia, and the need for a palliative careapproach. It also addresses specific issues in both caring for peoplewith dementia at the end of their lives and in supporting carers.Key wo rd s: Adva nced dem entia Carer support Palliative care

Part 1 of this series outlined recent guidance ondemenria care and provided information on dementiaand its different subtypes, the assessment processand the utility of cognitive screening too ls. Part 2foc use d on cienieiitiLi management, w ith particular emphasis onunderstanding and managing behavioural challenges; itdescribedpsychosocial interventions in dementia care in addition todiscussing current drug treatments for the condition.This article, part 3, brietly detines palliative care and exploresissues around barriers to palliative care in advanced dementia.It provides guidance on recognizing the advanced stages ofdementia, and bow nurses can care for and support peoplewith dementia in tbe tinal stages of their disease. Significantly,it also makes reference to tbe difficult decisions tacing familycaregivers at this stage and the psychological impact ofadvanced dementia on caregivers.

BackgroundApproximately 10000 people with dementia die eacb year intbe United Kingdom (UK) (Harris, 2007). Of tbi.s number,over 40% die in tbe comm unity (McCartby et al, 1997; Kay etal, 2000), and over 50% in hospital (McCarthy et al, 1997). Lesstban 2% of people in hospice care in tbe UK have a primary

Emma Ouldred is Deriicnti.i Niirst? Specialist and Catherine Bryant isConsultant Physiciiin, King's C ollege Hospitai N HS Trust, LondonAcct'picd tor pitblicalum:Jatmary 2008

diagnosis of dem entia (Kay et al, 2000 ). Additionally, tbereno cure for most tbrms of dementia; it is a progressive diseaa terminal condition like cancer, and yet it is not recognizas such. Access to palliative care services for people wiadvanced dementia is unequal and mucb less defined thpalliative care tor other terminal diseases such as cancer.What is palliative care?Tbe World Healtb Organization (WHO. 2004) recentstated tbat 'every person witb a progressive illness bas a rigto palliative care', and tbat palliative care is 'tbe active tocare of patients and families by a multiprofessional teawben the patients disease is no longer responsive to curatitreatment" (WH O, 1990).

Tbe wider model of palliative care fits well witb tperson-centred approach to dementia care first proposby Kitwood (1997), wbicb promotes bolistic care and need to see tbe person ratber than tbe disease. AccortngHen derson (2007), palliative care: Provides relief from pain and other distressing symptom Affirms life and sees dying as a natural process Intends neither to hasten nor postpone death Integrates tbe psychological and spiritual aspects of patiecare Offers a support system to belp people live as actively possible until deatb, and to families to belp cope duriillness and bereavemen t.However, the palliative care approach to dementia donot appear to be commonly adopted throughout tbe UIn 2002, tbe Audit Commission reported that specialsupport for managing people with advanced dementia wnot available in 40% of all areas of the UK, and dementcare specialists lack confidence in providing palliative caSampson et al (2006) undertook a retrospective case-noaudit of older patients dying on an acute medical ward 2002-2003; those with dementia were much less likely be referred to palliative care services than those withoa diagnosis of dementia (9% I'i 25%), and were prescribfewer palliative medications (28% i>s 51%). A retrospecstudy on a hospital ward for older people with mentbealtb needs in the UK showed patients witb end-stadementia bad a number of symptoms for which they dnot receive adequate palliative care (Lloyd-WilHams aPayne, 2002).Guidance on end-of-llfe care for older peopleRecently, attention has been tbcused on improving enof-life care for all older people. Th e D epa rtm ent

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I leakh (DH, 2004) document, The NHS Improvement Plan.included a commitment to develop a training programmelor staff working in primary care homes and hospitals toensure all people at the end of life, regardless of diagnosis,should have the choice of deciding where to die and howthey wish to be treated. In the Government white paper,i)iir Health Our Care Our Say (DH , 20i)6a), a comm itmentwas expressed to extend palliative care to .ill who need itregardless of terminal condition.The National Institute for Health and Clinical Excellence(NICE, 2004) has produced guidance on improving supportand palliative care for adults with cancer, and although thiswork is focused on services for adult patients with cancerliid their families, it may inform the development of servicemodels for othe r groups of patients. Th e NIC E (2004)document recommends three tools to support high-qualityend-of-life care:

The Gold Standards Framework (Thomas. 2003) t'he Liverpool care pathway Care of the Oyin^iA Pathwayto Excellence (EUershaw and Wilkinson, 2(K)3) The "Preferred Place of Care Plati" (www. cancerlan cash ire.rg.uk/ppc.html).

The NHS End of Ufe Care Programme (DH, 2005) aims toimprove care at the end of life for all. and the program ucwebsite (www.endotlifecare.nhs.uk/eoic) provides goodpractice, information and resources, including links to thethree tools.Guidance on end-of-llfe careThe development of policies specifically related to end-of-life care for people with dementia has evolved slowly, butrecently a number of important documents have addressedthis complex issue. Recent guidance has stipulated thatolder people with mental health problems should haveequal access to the same home-based end-of-care servicesas others, and that a palliative care model of servicedelivery should be made available for people with dementiasupported with advice from general medicine physicians,uid palhative care services (Care Services ImprovementPartnership, 2005).

Programmes on dignity and end of life, and mental healthin old age, are included in the follow-up to the documentA New Ambition for Old A^e: Next Steps in Impleiiiv!iliii_i; theNational Service Framework for Older People ( D H , 2 0 0 6 b ) .Dementia and palliative care are also included in theQuality and Outcomes Framework (QOF) for the GPcontract. Under this framework, GPs must hold a register ofpatients diagnosed with dementia, and under the paUiativecare QOF GPs must hold regular review meetings of thesepatients (Royal College of General Practitioners, 2006).

NI CE issued guidance on dementia in 2006 . whichspecifically addressed the need for a palliative care approachto dementia care to be adopted from diagnosis to deathto enhance the quality of life of people with dementiaand to enable them to die with dignity in an appropriateenvironment. A holistic approach to care is recommended,which encompasses the physical, psychological, social andspiritual needs of people with deme ntia, and also emphasizesthe importance of supporting families and carers. Primary

care teams should assess the palliative needs of people closeto death and relay information to other members of healthand social care. Specific guidance relating to nutrition, painrelief and resuscitation is also included.

NICE (2006) also recommends that practitioners discusscertain issues with the person with dementia while he orshe still has capacity, and to ensure people are familiar withthe main clauses of the Mental Capacity Act 2005 (MCA),which is initiated when a person does not have capacity.Such areas of discussion include: Use of advance statements (stating what is to be do ne if a

person loses capacity to communicate or make decisions) Advance decisions to refuse treatment Lasting power of attorney A preferred place-of-care plan.Barriers to providing palliative careThere are several barriers to overcome in order to achieveexcellent end-of-hfe care for people with dementia, namely: Dem entia is not recognized as termin al disease There are difficulties in prognostication and difficulties inrecognizing when somebody reaches the point at whichcare becomes palliative Problems in client comm unicability that impacts onsymptom management A lack of skills and know ledge in providers of care reg ardingpalliative care for people with advanced dementia, anda lack of access to specialist palliative care consultation(Shuster, 200(i) A lack of education and support about complicationsof advanced dementia, and limits to treatment optionsencourages healthcare proxies to request admission tohospital and aggressive interventions (Koopnians et al,

2003) A lack of advance decisions that set out the wishes of aperson to ta-atment in advance.There is evidence to suggestthat a person with dem entia is significantly less likely thana person with cancer to have set up advance decisions(Mitchell et .i!, 2004).Advanced dementiait is not inevitable that all people with dementia will reachthe end stages of their disease before death. Cox and Cook(2002) describe three ways in which people with dementiadie, namely: People with dementia may die with a medical condition

that is unrelated to the dementia, e.g. people with tnilddementia who develop and subsequently die from cancer People with dementia may die from a complex mix ofmental health and physical problems where dementia isnot the primary cause of death but interacts with otherconditions, such as chronic obstructive pulmonary disease People with dem entia may die with com phcations arising

advanced dementia.Signs and symptomsWhen does a person stop living with dementia and startdying from it? Failure to recognize when a person hasentered the advanced stages of dementia has been proposed

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Box 1. Typical feat ures of a dva nce ddementiaDependence in activities of daily living requiring theassistance of caregivers to surviveSevere impairment of expressive and receptivecommunication often limited to single words or nonsensephrasesLoss of the ability to walk followed by inability to stand .problems maintaining sitting posture and a subsequent lossof head and neck controlDeveiopment of contractures because of muscle rigidity andde-conditioningLoss of ability to recognize food, self-feed and swalloweffectivelyBowel and bladder incontinence[nabiiity to recog nize seifand others

as a possible barrier to the provision of palliative care forthis vulnerable group. Box 1 outlines typical features ofadvanced dementia and may help practitioners understandwhen palliative care services should be initiated.Specific care issuesCominunicationProblems wich communication are common in the laterstages of dementia. As dementia progresses a person'scognitive and communication abilities decline and itbecomes harder to ascertain accurately the wishes andneeds of the person (Shuster, 2000). Communicationproblems also hinder the identification of hunger, painand concurrent illness. Practitioners need to be trainedin conmiuniciiting with people with dementia if effectiveend-of-life care is to be provided.PainAlthough pain is not an obvious symptom of advanceddementia, it is miportant to remember that people withdementia may sufier pain roni coiiiorbid conditions such asarthritis or peripheral neuropathy. It isuseful to obtain a painhistory from the person with dementia and their caregiver.People with dementia may be unable to conceptuaUze paindue to visuospatial deficits caused by the dem entia, and thusit is useful to look at non-verbal indicators, such as facialexpression, tense body language and agitated bebaviour.The Assessment of Discomfort in Dementia protocolis designed to assess and treat pain and discomfort, andguides the user throug h a physical and medical assessmentof possible sources of pain and discom fort (Kovach, 2003).The Abbey Pain Scale is a brief assessment scale for peoplewith end-stage deme ntia. Th e scale consists of six items(e.g. physiological changes, physical changes) with fourresponse modalities scored from 0 (absent) to 3 (severe),with a range for the total scale of 0-1 8 (Abbey et al, 2004).The Royal College of Physicians et al (2007) have issuedcomprehensive guidance on the assessment of pain in olderpeople and highlights the challenges of identifying pain in

the presence of severe cognitive impairment, conimunicatiodifficulties or language and cultural barriers.

The analgesic drug of choice is influenced by the severity pain. However, it is usual to gradually move up the analgesladder and start with a simple drug such as paracetamol. Sompeople with dementia will require morphine, but this is liketo increa.se confusion (National Council for Palliative Caand Alzheimer's Society, 2006). Codeine is commonly usebut again it can sometimes cause increased confusion andlikely to cause constipation (British National Formulai^ 200Analgesics should be administe red regularly every 36 hourather, than on demand, to ensure freedom from pain (WH2006).Transdermal patches and medication, which are availabin suspension or dispenible format, should be considered. Nopharmacological ways of managing pain, such as aromatherapmassage and transcutaneous electrical nerve stimulation, shoube considered despite a lack of evidence.SAvaUo\ving, eatng and drinkingDysphagia is a common feature of advanced dementaffecting up to 70% of people (Feinberg et al, 1992). Othfactors affecting nutrition in advanced dementia include loof appetite, loss of hunger and problems with dyspraxia thaffect the process of feeding (Hugh es et al, 2007).M a n a g e m e n tEating apraxia can be managed by hand-feeding, and foorefusal may respond to antidepressants or appetite stinuiLmSwallowing difTiculties can be minimized by adjustmeof diet texture and replacing thin with thickened flui(Treloar, 2007).

Artificia l hydration and nutritionThe most common form ot medical treatment for problemwith eating and drinking is artificial hydration and nutritiosuch as percutaneous endoscopie gastrostomy, nasogastrtubes and subcutaneous infusions. However, in people widementia, artificial hydration and feeding when comparwith hand-feeding has no evident benefits in terms of surviv(Meir et al, 2001). Artificial feeding does not reduce the riof aspiration pneum onia infections, pressure sores, or offset teffects of malnutrition (Finucane et al, 1999). Despite researcsu^ estin g little or no benefit, up to 44% people with dementdie with feeding mbes in situ (Gillick, 2000). The AlzheimeSociety (2007) does not consider the use ofa tube for artificihydration and feeding as best practice in the advanced stagesdementia. C'aregivers need to be supported in understandithe potentiai complications associated with tubes and tappetite changes associated with advanced dementia.Infect ionInfections are an unavoidable consequence of advancdementia due to an inability to report symptoms, decreasimmune responses to infections and loss of ability to ambula(Robinson et al. 2005). Howe ver, the effectiveness of antibiotherapy is limited by the recurrent nature of infections advanced dementia. The use of antibiotics in people wiadvanced dementia should take into consideration trecurrent nature of infections, which are caused by persiste

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swallowing difficulties with aspiration, and by other factors,such as poor fluid intake anddehydration, predisposingfor development of infections that significantly reducesthe benefits of antibiotic therapy (Vblicer et al, 1998). Thepalliative use of antibiotics should he considered on anindividual patient basis (NI CE, 2006),FeverFever should be clinically assessed. Consider treatments suchas simple analgesics, antipyretics andmechanical coohng(NICE, 2006).Depression and psychosisThe incidence of depression is high inadvanced dementia(National Council for Palliative Care, 2006). Antidepressants,

such as selective serotonin re-uptake inhibitors (SSRshould be considered as they have fewer side-effects andshown to have good efficacy (Doody etal, 2001).

Up to 40% of people with dementia suffer fpsychosis (National Council for Palliative Care aAlzheimer's Society, 2006). It is often the causebehavioural disruption. Despite the increased risk of stand possible deleterious cognitive effect, antipsycho(such as risperidone and olanzapine) are the only effectreatment for psychosis, and if it is severely distresthen It should be treated (Treloar, 2007). In a restudy of people with advanced dementia who were cafor at home until they died, it was antipsychotics aantidepressants that were rated asmore useful thanother class of medication {Treloar, 2007).

Case study 1. Care of the person with advanced dementia at homeMrs T is a 73'year-old lady with Parkinson's disease and advanced dementia. She l ives at home w i th herson, daughter-in-law main carer) and hertwo grandchi ldren. Mrs T is fuHy dependent for ail her activities of daily l iving. She is bed/chair bound and requires hoist ing. She is incontinent of urinand faeces. She has dysphagia and is at high risk of aspirat ion. Her pressure areas are intact (she has a pressure rel ieving cushion and mattress). Sheunable to communicate herwishes and has iost her grasp of English (her first language is Gujarat and she may respond to a few words spoken in hernative tongue). She loves being around her family and enjoys regular massage sessions at home, Mrs T fulfils the criteria for NHS Continuing Care.She has a care package consist ing of two carers three t imes a day to attend to her personal care, perform pressure area care and address toi let ingneeds. Mrs T's daughter-in-law. Sema, administers hermedicat ion andmanages her feeding (Mrs T requires feeding and can only take fort i f ied l iquidsupplements because of her dysphagia), andalso attends to her el iminat ion andpsychosocial needs at all other t imes. Mrs T used to at tend the localmemory cl inic (she presented to clinic at an advanced stage of dement ia), but as her condi t ion has progressed, the dementia nurse specialist (DNS) anAlzheimer's support worker visited her at home on a regular basis to provide support for her an d the family. Onarecent visit to the family, the DNSexplored end-of-l i fe issues with them. They expressed the wish forher to stay at home and die peaceful ly when the t ime comes. Sema and her husbaexpressed concerns reg arding thewish to avoid hospital admission if at all possible, the wish to avoid tube-feeding, and the need for intensive andimmediate medical support and advice when required. The fear of not knowing what to do ifM rs T started to exhibi t d ist ressing symptoms was a maconcern for the family.Case-conferenceThe DNS organized a case-conference to explore and discuss the pall iat ive care needs of M rs T an d her family. Present at the case-conerence was: Se ma DNS GP District nurse Communi ty matron Speech and language therapist (SALT) Care agency managerProfessional rolesThe care needs of M rs T an d her family were discussed, Awri t ten plan of care was formulated, which addressed care issues and the family's concernsan d set out each person's professional roles and responsibi i i t ies: GP - review medicat ion and reduce amount of tablets if indicated. GP also offered to speak to Sema by telephone (and visit asnecessary) whenever

any medicai concerns arose SALT - assess swaiiow and provide advice on reducing risk of aspiration Dist rict nurses/communi ty matron - assess pressure area risk and provide equipment as appropr iate Communi ty matron - provide contact detai is to Sema and coordinate care of Mrs T, including review of care pian through regular contact Care agency manager - provide experienced carers and ensure there is continuity of care to enabie a rapport to be estabiished between caregivers DNS - refer Mrs T and Sema to local hospice home-care team to review Mrs T. support her famiiy and provide contact detai ls; refer Mrs T to a

Parkinson's nurse speciaiist for review; speak to sociai services to request respite care at home for Sema {as she did not wish for her mother- in lawto go into a care home for respite); and to maintain regular contact with Mrs T an d her famiiy aiong with the Alzheimer 's support worker.

Mrs T's famiiy ai lowed to advocate on her behalf, andwere given the opportuni ty and support to explore end-of-l i fe issuesClose collaborat ion andunderstan ding across heaith andsocial care agenciesFormulat ion of awrit ten care plan that is shared across agenciesDesignated case manager who wil l regularly review care plan

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NEUROSCIENCE NURSINGSpiritual needsThere is evidence tos u r e s t the spiritual needs of thosedying with dementia are often ignored. In a recent studythat compared the case notes of patients with and withoutdementia who died during acute hospital admission, Sampsonet al (2IH)6) found signfR\mtly fewer p;itients with dementiawh o m ade any mention of their rehgious faith. Spiritual needsgo beyond attention toreligious practice, and practitionersmay tieed to find out a person's spiritual needs by talking totheir carer ifcommunication is difficult.Psychological needsI'tactitioncrs need to he sensitive to the psychologicalimpact of advanced dem entia on the person with the disease.Moving a person with dementia from one environment toanother, such as from a care home to anacute hospitalsetting, can he traumatizing and provoke feelings of lossand separation that might manifest themselves as behaviourthat challenges.Family caregiversTo improve palliative care for people with dementia thereneeds to he greater comminiication with families andproxies. They need to be given clear information about thedisease trajectory, complications ofdementia and limitedtreatment options (Caplan et al. 2006).The progression of dementia confronts families andproxies with difficult ethical andmoral decisions, andcaregivers need to be supported through this difficultperiod.There is also evidence to suggest that themore socialsupport carers receive pre-bereavetnent, the hetter adjustedthey are post-bereavement (Schulz et al. 2003).Recommendatlons for Improvements to care11.iiKock ct al (2006) eke several ways mwhich care ofpeople with advanced dementia can be improved, namely: The development of evidence-based guidelines to informpractice for people with advanced dementia, includingplanning ofgoals early in disease trajectory, and feedingsymptom management with emphasis placed on bereavementcare for families Increased awareness during the early stages of dementia ofadvance decisions More research into palliative care needs of people withadvanced dementia Health providers to he educated about theneed for

palliative care, especially applying principles ofpalliativecare to advanced dementia A palliative care approach rather than specialist palliativecare services, and palliative care interventions which focuson pain .md symptom management and communicationregarding end-of-life issues. Consu ltation of specialistsand multidisciplinary teams would encourageflexihleandresponsive service. Continuity of care and collaboration between healthcareprofessionals is important for good quality palliative care Communication between professional care providers andfamilies is critical to minimize therisk of conflictingopinions in management goals.

Case Study 1 highlights the benefits of a multidisciplinaryapproach tothe care of a person with advanced dementiawithin the home environment.ConclusionDementia is aprogressive and incurable condition. Currentevidence suggests that people with advanced dementia donot have equity of access to specialized palliative care services(Audit Com mission, 2002 ). There have been a number ofrecent health policy documents and guidelines inthe UKemphasizing the need for improving the quality and accessof palliative care for all people, and for those with demetitia(Care Services Improvement Partnership, 2005; 1)H. 2005).The role ofpalliative care services for people with advanceddementia has unfortunately heen underutilized up to now.The ethos ofpalliative care, however, is consistent with aperson-centred approach to care of people with dementia.

Health practitioners need to beable to recognize theclinical features ofadvanced dementia. Specific issues forconsideration in palliative care in advanced dementia includehydration and nutrition,managem ent ofpain.and managementof depression. It may hevery difficult to communicate with aperson with advanced dementia hut carers can bestrongadvocates on their behalf. It ishoped that the MCA willempower people with dementia tobe able tomake theirwishes and thoughts on their care in advanced stages of thedisease known. It will also give carers the legal right to makewelfare decisions on their behalf through a lasting power ofattorney. Good palliative care for those with advanceddementia will be a multidisciplinary team approach that willnot only consider the person with dementia but also supporttheir families and carers. UH

Abbey J, Piller N. De Bellis A ctal (2(>l)4) Tht- Abbey pain scale: a 1-minutenuni t r i c i l i ndica tor for people with end s tage dementia, nt J Polliat Nun3Alzheimers Si>ciety (2(K)7) Palliative care/withdrawing and wi thholding[rfatiiieiit. Position Staieiiieiic. Alz heim ers S iiiicry, Lo nd on . Available al:http: / /0 nyiirl .c om/ 2kiJ4 f (last acces .sed 5March 2(H)8)Aiitlit Commission (21)02) Forget Me Not: Devclopitig Mental Health Servas forOlder l\opk ill England. Auclit CCommission, LondonBrit ish National Formulary (2008) C:odeine Phospliatc. BNF 54. UMJPublishinj i Group Lid .md RPS Piitilishing, LondonCaplan CiA, MCIKT A. St|Uires B. i:iiaii S. Willct t W (2il0f.) Ad\'ancc carepianning and hospital in the nurs ing home. i ,i;c .-H.Ciiifi, 35(6): 581-5Care Services Impnwement I'artnership (2l)0f>) ii ' i^' 'myl Btisiiu-ss: liitcgmtingMental Haillli Si-n-ias for Older .AdultyCSIl ' . LondonClare L. Woods RJ {21H)4) Cog nitiv e trainin g and Cognit ive training tor peoplewith i-ariy stage Alzheimer's disease, a review. Neimfsychol Rehabiti 14(4):3 8 5 - 4 0 1Cox S, Cook A {2(K)2) Caring for people u i th dement i a at the end. In: Hocklt*yJ, Clark D, eds. Palliatiiv Care or Older People in ('are Homes. Open Universi tyPres .s , Buckingham: 86-103[>eparntifnt of Hfalth (2(X)4) Tlie NHS Improvement MMI: hitting People it flu-Ha m of Pi'l'li'' Sfrt'is. H M S O . L o n d o nDepar t tnent of Health (20115) 77ic \'HS Bud of Ufi Care / ^ M I I I H C . H M S O ,London. Available at: www.endofiifccare.iihs.iik/eolc (last acces.sed 29October 2CH17)l>fpar tmtnt of Health (20()6a) (Sur Health Our Care Say: A New DimtionforCommunity Sewices. OH. LondonD e p a r t m e n t ofHealth (2

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^ MJ, Ekb erg O, S e ^ L,Tully J (1992) Degluti t ion in elderly patieniswith demenna: findings of videofluoragraphic evaluation and impact ons taging and m anagement . Radiology 183(3) ; 811-14Finucanc TE , Travis K, Chris tmas C (1999) Tube feeding in pat ients withadvanced dementia: a review of the evidence. JA.\L^ 282(14): 36.S-7UGillick M R (2(HI0) Rethi nkin g the role of tube feeding in pat ients withadvanced dementia. N EnfilJ Med 342(3); 2(16-10Hanco ck K. Cha ng E, Johns on A et aJ (2006) Pall iat ive care for people withadvanced d ementia: Th e n eed for a collaborat ive, evidence-based approach.Alzheimer's C are Quarterly 7(1) : 49-57Harris D (20()7) Forget me not: pal l iat ive care for people with dementia.Postgrad MedJ 83(98(1): 362- 6Henderson J (20f>7) Palliative care in dementia: caring at home to the end.Journal oj Dementia Care 15(3): 2 46Hug hes JC , Jol ley D, jonian A, Sampson EL (2(X)7) Palliative care in dementia:issues an d evide nce, .^(iiiiocc in Psychiatric Treatment 1 3 : 2 5 1 - 6 0Kay DW, Forster D P, New ens AJ (201 )(l) Lon g-t em i survival, place of death an ddeath cert ificat ion in cl inical ly diagnosed pa' -senile dementia in northernEngland. Follow-up afi:er S-12 years. Br J Psychiatry 177; 1 5 6 - 6 2Kitwood T (1997) Dementia Reconsidered: The Person Comes First. O p e nUniversi ty Press , Buckingham

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KEY POINTSI Advanced d ementia should be regarded as a terminal illness.I There is unequal access to palliative care services for people with advanceddementia.

I Pain is under-recognized in people with advanced dementia but the use ofscreening tools and Improved skills in recognizing non-verbal signs of painhelp to improve management of pain.

I Practitioners should ideally discuss certain issues with the person withdementia w hile they stiii have capacity, such as advanced statements.preferred piace of care plan and lasting power of attorney.

I Peopie with advanced dementia deserve the same quality of palliative careas people with other terminal diseases.

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