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Dementia care. Part 3: end-of-life care for people with advanced dementia

Emma Ouldred, Catherine Bryant

Abstract

End-of-life care issues for people with advanced dementia have only recentíy been addressed in guidance. There appear to be barriers to accessing good palliative care for people in the terminal phase of the disease. The reasons for this are multifactorial, but may be attributed to factors such as dementia not being recognized as a terminal disease like cancer, problems in recognizing the symptoms of terminal dementia, and decision-making conflicts between family caregivers and other health and social care providers. This article highlights common symptoms of advanced dementia, and the need for a palliative care approach. It also addresses specific issues in both caring for people with dementia at the end of their lives and in supporting carers.

Key words: Advanced dementia

Carer support •

Palliative care

P art 1 of this series outlined recent guidance on demenria care and provided information on dementia and its different subtypes, the assessment process and the utility of cognitive screening tools. Part 2

focused on cienieiitiLi management, with particular emphasis on understanding and managing behavioural challenges; it described psychosocial interventions in dementia care in addition to discussing current drug treatments for the condition. This article, part 3, brietly detines palliative care and explores issues around barriers to palliative care in advanced dementia. It provides guidance on recognizing the advanced stages of dementia, and bow nurses can care for and support people with dementia in tbe tinal stages of their disease. Significantly, it also makes reference to tbe difficult decisions tacing family caregivers at this stage and the psychological impact of advanced dementia on caregivers.

Background

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

Emma Ouldred is Deriicnti.i Niirst? Specialist and Catherine Bryant is Consultant Physiciiin, King's College Hospitai NHS Trust, London

Acct'picd tor pitblicalum:Jatmary

2008

diagnosis of dementia (Kay et al, 2000). Additionally, tbere is no cure for most tbrms of dementia; it is a progressive disease,

a terminal condition like cancer, and yet it is not recognized as such. Access to palliative care services for people with advanced dementia is unequal and mucb less defined than palliative care tor other terminal diseases such as cancer.

What is palliative care?

Tbe World Healtb Organization (WHO. 2004) recently stated tbat 'every person witb a progressive illness bas a right to palliative care', and tbat palliative care is 'tbe active total care of patients and families by a multiprofessional team wben the patients disease is no longer responsive to curative treatment" (WHO, 1990).

Tbe wider model of palliative care fits well witb tbe person-centred approach to dementia care first proposed by Kitwood (1997), wbicb promotes bolistic care and a need to see tbe person ratber than tbe disease. AccortÜng to Henderson (2007), palliative care:

• Provides relief from pain and other distressing symptoms

• Affirms life and sees dying as a natural process

• Intends neither to hasten nor postpone death

• Integrates tbe psychological and spiritual aspects of patient care

• Offers a support system to belp people live as actively as possible until deatb, and to families to belp cope during illness and bereavement. However, the palliative care approach to dementia does not appear to be commonly adopted throughout tbe UK. In 2002, tbe Audit Commission reported that specialist support for managing people with advanced dementia was

not available in 40% of all areas of the UK, and dementia care specialists lack confidence in providing palliative care. Sampson et al (2006) undertook a retrospective case-note audit of older patients dying on an acute medical ward in 2002-2003; those with dementia were much less likely to be referred to palliative care services than those without

a diagnosis of dementia (9% I'i 25%), and were prescribed

fewer

study on a hospital ward for older people with mental bealtb needs in the UK showed patients witb end-stage dementia bad a number of symptoms for which they did not receive adequate palliative care (Lloyd-WilHams and Payne, 2002).

palliative medications (28% i>s 51%). A retrospective

Guidance on end-of-llfe care for older people

Recently, attention has been tbcused on improving end- of-life care for all older people. The Department of

I leakh (DH, 2004) document, The NHS Improvement Plan. included a commitment to develop a training programme lor staff working in primary care homes and hospitals to ensure all people at the end of life, regardless of diagnosis, should have the choice of deciding where to die and how they wish to be treated. In the Government white paper, i)iir Health Our Care Our Say (DH, 20i)6a), a commitment was expressed to extend palliative care to .ill who need it regardless of terminal condition.

The National Institute for Health and Clinical Excellence (NICE, 2004) has produced guidance on improving support and palliative care for adults with cancer, and although this work is focused on services for adult patients with cancer •liid their families, it may inform the development of service models for other groups of patients. The NICE (2004) document recommends three tools to support high-quality end-of-life care:

NEUROSCIENCE NURSING

care teams should assess the palliative needs of people close to death and relay information to other members of health and social care. Specific guidance relating to nutrition, pain relief and resuscitation is also included.

NICE (2006) also recommends that practitioners discuss certain issues with the person with dementia while he or she still has capacity, and to ensure people are familiar with the 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 done 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 care

• The Gold Standards Framework (Thomas. 2003)

• t'he Liverpool care pathway Care of the Oyin^iA Pathway

There are several barriers to overcome in order to achieve excellent end-of-hfe care for people with dementia, namely:

to Excellence (EUershaw and Wilkinson, 2(K)3)

Dementia is not recognized as terminal disease

 

• The "Preferred Place of Care

Plati" (www. cancerlan cash ire.

There are difficulties in prognostication and difficulties in

ürg.uk/ppc.html). The NHS End of Ufe Care Programme (DH, 2005) aims to

recognizing when somebody reaches the point at which care becomes palliative

improve care at the end of life for all. and the programuîc

Problems

in

client

communicability

that

impacts

on

website

(www.endotlifecare.nhs.uk/eoic)

provides good

symptom management

 

practice, information and resources, including links to the

A

lack ofskills and knowledge in providers of care regarding

three tools.

palliative care for people with advanced dementia, and

Guidance on end-of-llfe care

lack of access to specialist palliative care consultation (Shuster, 200(i)

a

The development of policies specifically related to end-of- life care for people with dementia has evolved slowly, but recently a number of important documents have addressed this complex issue. Recent guidance has stipulated that

A lack of education and support about complications of advanced dementia, and limits to treatment options encourages healthcare proxies to request admission to hospital and aggressive interventions (Koopnians et al,

older people with mental health problems should have

2003)

equal access to the same home-based end-of-care services

A lack of advance decisions that set out the wishes of a

as others, and that a palliative care model of service delivery should be made available for people with dementia

person to ta-atment in advance.There is evidence to suggest that a person with dementia is significantly less likely than

supported with advice from general medicine physicians ,uid palhative care services (Care Services Improvement

person with cancer to have set up advance decisions (Mitchell et .i!, 2004).

a

Partnership, 2005). Programmes on dignity and end of life, and mental health in old age, are included in the follow-up to the document

Advanced dementia

it is not inevitable that all people with dementia will reach

• People with dementia may die with a medical condition

A New Ambition for Old A^e: Next

Steps in Impleiiiv!iliii_i; the

the end stages of their disease before death. Cox and Cook

National

Service Framework for Older People (DH, 2006b).

(2002) describe three ways in which people with dementia

Dementia and palliative care are also included in the Quality and Outcomes Framework (QOF) for the GP contract. Under this framework, GPs must hold a register of patients diagnosed with dementia, and under the paUiative

die, namely:

that is unrelated to the dementia, e.g. people with tnild dementia who develop and subsequently die from cancer

care QOF GPs must hold regular review meetings of these patients (Royal College of General Practitioners, 2006). NICE issued guidance on dementia in 2006. which specifically addressed the need for a palliative care approach

• People with dementia may die from a complex mix of mental health and physical problems where dementia is not the primary cause of death but interacts with other conditions, such as chronic obstructive pulmonary disease

to dementia care to be adopted from diagnosis to death to enhance the quality of life of people with dementia

• People with dementia may die with comphcations arising advanced dementia.

and to enable them to die with dignity in an appropriate environment. A holistic approach to care is recommended,

Signs and symptoms

 

which encompasses the physical, psychological, social and spiritual needs of people with dementia, and also emphasizes the importance of supporting families and carers. Primary

When does a person stop living with dementia and start dying from it? Failure to recognize when a person has entered the advanced stages of dementia has been proposed

310

Box 1. Typical features of advanced dementia

Dependence in activities of daily living requiring the assistance of caregivers to survive Severe impairment of expressive and receptive communication often limited to single words or nonsense

phrases

Loss of the ability to walk followed by inability to stand. problems maintaining sitting posture and a subsequent loss of head and neck control Deveiopment of contractures because of muscle rigidity and de-conditioning Loss of ability to recognize food, self-feed and swallow effectively Bowel and bladder incontinence [nabiiity to recognize seifand others

as a possible barrier to the provision of palliative care for

this vulnerable group. Box 1 outlines typical features

advanced dementia and may help practitioners understand when palliative care services should be initiated.

of

Specific care issues Cominunication

Problems wich communication are common in the later stages of dementia. As dementia progresses a person's cognitive and communication abilities decline and it becomes harder to ascertain accurately the wishes and needs of the person (Shuster, 2000). Communication problems also hinder the identification of hunger, pain and concurrent illness. Practitioners need to be trained in conmiuniciiting with people with dementia if effective end-of-life care is to be provided.

Pain Although pain is not an obvious symptom of advanced dementia, it is miportant to remember that people with dementia may sufier pain üroni coiiiorbid conditions such as arthritis or peripheral neuropathy. It is useful to obtain a pain history from the person with dementia and their caregiver. People with dementia may be unable to conceptuaUze pain due to visuospatial deficits caused by the dementia, and thus it is useful to look at non-verbal indicators, such as facial expression, tense body language and agitated bebaviour. The Assessment of Discomfort in Dementia protocol is designed to assess and treat pain and discomfort, and guides the user through a physical and medical assessment of possible sources of pain and discomfort (Kovach, 2003). The Abbey Pain Scale is a brief assessment scale for people with end-stage dementia. The scale consists of six items (e.g. physiological changes, physical changes) with four response modalities scored from 0 (absent) to 3 (severe), with a range for the total scale of 0-18 (Abbey et al, 2004). The Royal College of Physicians et al (2007) have issued comprehensive guidance on the assessment of pain in older people and highlights the challenges of identifying pain in

the presence of severe cognitive impairment, conimunication difficulties or language and cultural barriers. The analgesic drug of choice is influenced by the severity of pain. However, it is usual to gradually move up the analgesic ladder and start with a simple drug such as paracetamol. Some people with dementia will require morphine, but this is likely to increa.se confusion (National Council for Palliative Care and Alzheimer's Society, 2006). Codeine is commonly used, but again it can sometimes cause increased confusion and is likely to cause constipation (British National Formulai^ 2008). Analgesics should be administered regularly every 3—6 hours rather, than on demand, to ensure freedom from pain (WHO, 2006).Transdermal patches and medication, which are available in suspension or dispenible format, should be considered. Non- pharmacological ways of managing pain, such as aromatherapy, massage and transcutaneous electrical nerve stimulation, should be considered despite a lack of evidence.

SAvaUo\ving, eatíng and drinking Dysphagia is a common feature of advanced dementia, affecting up to 70% of people (Feinberg et al, 1992). Other factors affecting nutrition in advanced dementia include loss of appetite, loss of hunger and problems with dyspraxia that affect the process of feeding (Hughes et al, 2007).

Management Eating apraxia can be managed by hand-feeding, and fooil refusal may respond to antidepressants or appetite stinuiLmts. Swallowing difTiculties can be minimized by adjustment of diet texture and replacing thin with thickened fluids (Treloar, 2007).

Artificial hydration and nutrition The most common form ot medical treatment for problems with eating and drinking is artificial hydration and nutrition such as percutaneous endoscopie gastrostomy, nasogastric tubes and subcutaneous infusions. However, in people with dementia, artificial hydration and feeding when compared with hand-feeding has no evident benefits in terms of survival (Meir et al, 2001). Artificial feeding does not reduce the risk of aspiration pneumonia infections, pressure sores, or offset the effects of malnutrition (Finucane et al, 1999). Despite research su^esting little or no benefit, up to 44% people with dementia die with feeding mbes in situ (Gillick, 2000). The Alzheimer's Society (2007) does not consider the use ofa tube for artificial hydration and feeding as best practice in the advanced stages ot dementia. C'aregivers need to be supported in understanding the potentiai complications associated with tubes and the appetite changes associated with advanced dementia.

Infection Infections are an unavoidable consequence of advanced dementia due to an inability to report symptoms, decreased immune responses to infections and loss of ability to ambulate (Robinson et al. 2005). However, the effectiveness of antibiotic therapy is limited by the recurrent nature of infections in advanced dementia. The use of antibiotics in people with advanced dementia should take into consideration the recurrent nature of infections, which are caused by persistent

Lintisii lourii.ll ii!" Niirsjiig. 2U(I«.V()I 17, Nii S

swallowing difficulties with aspiration, and by other factors, such as poor fluid intake and dehydration, predisposing for development o f infections that significantly reduces the benefits of antibiotic therapy (Vblicer et al, 1998). The palliative use of antibiotics should he considered on an individual patient basis (NICE, 2006),

Fever

Fever should be clinically assessed. Consider treatments such

as simple analgesics, antipyretics (NICE, 2006).

and mechanical coohng

Depression and psychosis The incidence of depression is high in advanced dementia (National Council for Palliative Care, 2006). Antidepressants,

such as selective serotonin re-uptake inhibitors (SSRIs), should be considered as they have fewer side-effects and are shown to have good efficacy (Doody et al, 2001). Up to 40% of people with dementia suffer from psychosis (National Council for Palliative Care and Alzheimer's Society, 2006). It is often the cause of behavioural disruption. Despite the increased risk of stroke and possible deleterious cognitive effect, antipsychotics (such as risperidone and olanzapine) are the only effective treatment for psychosis, and if it is severely distressing then It should be treated (Treloar, 2007). In a recent study of people with advanced dementia who were cared

for at home until they died,

antidepressants that were rated as more useful than any other class of medication {Treloar, 2007).

it was antipsychotics and

Case study 1. Care of the person with advanced dementia at home

Mrs T is a 73'year-old lady with Parkinson's disease and advanced dementia. She lives at home with her son, daughter-in-law ¡main carer) and her tw o grandchildren. Mrs T is fuHy dependent for ail her activities of daily living. She is bed/chair bound and requires hoisting. She is incontinent of urine and faeces. She has dysphagia and is at high risk of aspiration. Her pressure areas are intact (she has a pressure relieving cushion and mattress). She is unable to communicate her wishes and has iost her grasp of English (her first language is Gujarat and she may respond to a few words spoken in her native 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 consisting of tw o carers three times a day t o attend t o her personal care, perform pressure area care and address toileting needs. Mrs T's daughter-in-law. Sema, administers her medication and manages her feeding (Mrs T requires feeding and can only take fortified liquid supplements because of her dysphagia), and also attends to her elimination and psychosocial needs at all other times. Mrs T used to attend the local memory clinic (she presented to clinic at an advanced stage of dementia), but as her condition has progressed, the dementia nurse specialist (DNS) and Alzheimer's support worker visited her at home on a regular basis to provide support for her and the family. On a recent visit to the family, the DNS explored end-of-life issues with them. They expressed the wish for her to stay at home and die peacefully when the time comes. Sema and her husband expressed concerns regarding the wish to avoid hospital admission if at all possible, the wish to avoid tube-feeding, and the need for intensive and immediate medical support and advice when required. The fear of not knowing what to do if Mrs T started to exhibit distressing symptoms was a major concern for the family.

Case-conference

The DNS organized a case-conference t o explore and discuss th e palliative care needs of Mrs T and her family. Present at th e case-conñerence was:

Sema

DNS

GP

District nurse

Community matron

Speech and language therapist (SALT)

Care agency manager

Professional roles

The care needs of Mrs T and her family were discussed, A written plan of care was formulated, which addressed care issues and the family's concerns, and set out each person's professional roles and responsibiiities:

• GP - review medication and reduce amount of tablets if indicated. GP also offered to speak to Sema by telephone (and visit as necessary) whenever any medicai concerns arose

• SALT - assess swaiiow and provide advice on reducing risk of aspiration

• District nurses/community matron - assess pressure area risk and provide equipment as appropriate

• Community matron - provide contact detaiis 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 details; refer Mrs T to a Parkinson's nurse speciaiist for review; speak to sociai services t o request respite care at home for Sema {as she did not wish for her mother-in law to g o into a care home for respite); and to maintain regular contact with Mrs T and her famiiy aiong with the Alzheimer's support worker.

Mrs T's famiiy ailowed to advocate on her behalf, and were given the opportunity and support to explore end-of-life issues Close collaboration and understanding across heaith and social care agencies Formulation of a written care plan that is shared across agencies Designated case manager who will regularly review care plan

312

Uriiish Joiirii:il ot

^ , 2lHIK,Viil 17, N o 5

Spiritual needs There is evidence to surest the spiritual needs of those dying with dementia are often ignored. In a recent study that compared the case notes of patients with and without dementia who died during acute hospital admission, Sampson et al (2IH)6) found signÍfR\mtly fewer p;itients with dementia who made any mention of their rehgious faith. Spiritual needs go beyond attention to religious practice, and practitioners may tieed to find out a person's spiritual needs by talking to their carer if communication is difficult.

Psychological needs I'tactitioncrs need to he sensitive to the psychological impact of advanced dementia on the person with the disease. Moving a person with dementia from one environment to another, such as from a care home to an acute hospital setting, can he traumatizing and provoke feelings of loss and separation that might manifest themselves as behaviour that challenges.

Family caregivers To improve palliative care for people with dementia there needs to he greater comminiication with families and proxies. They need to be given clear information about the disease trajectory, complications o f dementia and limited treatment options (Caplan et al. 2006). The progression of dementia confronts families and proxies with difficult ethical and moral decisions, and caregivers need to be supported through this difficult period.There is also evidence to suggest that the more social support carers receive pre-bereavetnent, the hetter adjusted they are post-bereavement (Schulz et al. 2003).

Recommendatlons for Improvements to care

11.iiKock ct al (2006)

eke several ways m which care of

people with advanced dementia can be improved, namely:

• The development of evidence-based guidelines to inform practice for people with advanced dementia, including planning of goals early in disease trajectory, and feeding symptom management with emphasis placed on bereavement care for families

• Increased awareness during the early stages of dementia of advance decisions

• More research into palliative care needs of people with advanced dementia

• Health providers to he educated about th e need for palliative care, especially applying principles of palliative care to advanced dementia

• A palliative care approach rather than specialist palliative care services, and palliative care interventions which focus on pain .md symptom management and communication regarding end-of-life issues. Consultation of specialists and multidisciplinary teams would encourageflexihleand responsive service.

• Continuity of care and collaboration between healthcare professionals is important for good quality palliative care

• Communication between professional care providers and families is critical to minimize the risk of conflicting opinions in management goals.

iinii'.hj.iiirti.i! ofNiirMiii;. 2U(iK,Vd 17, N u 5

NEUROSCIENCE NURSING

Case Study 1 highlights the benefits of a multidisciplinary approach to the care of a person with advanced dementia within the home environment.

Conclusion Dementia is a progressive and incurable condition. Current evidence suggests that people with advanced dementia do not have equity of access to specialized palliative care services (Audit Commission, 2002). There have been a number of recent health policy documents and guidelines in the UK emphasizing the need for improving the quality and access of palliative care for all people, and for those with demetitia (Care Services Improvement Partnership, 2005; 1)H. 2005). The role of palliative care services for people with advanced dementia has unfortunately heen underutilized up to now. The ethos of palliative care, however, is consistent with a person-centred approach to care of people with dementia.

Health practitioners need to b e able to recognize the clinical features of advanced dementia. Specific issues for consideration in palliative care in advanced dementia include hydration and nutrition,management ofpain.and management of depression. It may he very difficult to communicate with a person with advanced dementia hut carers can b e strong advocates on their behalf. It is hoped that the MCA will empower people with dementia to be able to make their wishes and thoughts on their care in advanced stages of the

disease known. It will also give carers the legal right to make welfare decisions on their behalf through a lasting power of attorney. Good palliative care for those with advanced dementia will be a multidisciplinary team approach that will not only consider the person with dementia but also support

their families and carers.

UH

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KEY POINTS

I Advanced dementia should be regarded as a terminal illness.

I There is unequal access to palliative care services for people with advanced dementia.

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

I Practitioners should ideally discuss certain issues with the person with dementia while 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 care as people with other terminal diseases.

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The B|N welcomes unsolicited articles on a range of clinical issues. ALL manuscripts should be submitted to our online article submission system, Epress, at:

w\AAA/.epress.ac.uk/bjn/webforms/author.php (please note that all articles are subject to external, double-blind peer review).

If you have any queries or questions regarding submitting an articie to the journal please contact Asa Bailey, Editor, at: asa@markallengroup.com

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