Dementia care.
Part 3: end-of-life care
for people with advanced dementia
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
308
Emma Ouldred, Catherine Bryant
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 palliative medications (28% i>s 51%). A retrospective
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).
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
|oiini.il of Nursing. 2UiIS,Viil 17. No 5

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:
• The Gold Standards Framework (Thomas. 2003)
• t'he Liverpool care pathway Care of the Oyin^iA Pathway
to Excellence (EUershaw and Wilkinson, 2(K)3)
• The "Preferred Place of Care Plati" (www. cancerlan cash ire.
ürg.uk/ppc.html).
The NHS End of Ufe Care Programme (DH, 2005) aims to
improve care at the end of life for all. and the programuîc
website (www.endotlifecare.nhs.uk/eoic) provides good
practice, information and resources, including links to the
three tools.
Guidance on end-of-llfe care
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
older people with mental health problems should have
equal access to the same home-based end-of-care services
as others, and that a palliative care model of service
delivery should be made available for people with dementia
supported with advice from general medicine physicians
,uid palhative care services (Care Services Improvement
Partnership, 2005).
Programmes on dignity and end of life, and mental health
in old age, are included in the follow-up to the document
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).
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
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
to dementia care to be adopted from diagnosis to death
to enhance the quality of life of people with dementia
and to enable them to die with dignity in an appropriate
environment. A holistic approach to care is recommended,
which encompasses the physical, psychological, social and
spiritual needs of people with dementia, and also emphasizes
the importance of supporting families and carers. Primary
UritishJuuriMl ol'Nursing,2tKm.Vol 17.No 5
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
There are several barriers to overcome in order to achieve
excellent end-of-hfe care for people with dementia, namely:
• Dementia is not recognized as terminal disease
• There are difficulties in prognostication and difficulties in
recognizing when somebody reaches the point at which
care becomes palliative
• Problems in client communicability that impacts on
symptom management
• A lack of skills and knowledge in providers of care regarding
palliative care for people with advanced dementia, and
a lack of access to specialist palliative care consultation
(Shuster, 200(i)
• 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,
2003)
• A lack of advance decisions that set out the wishes of a
person to ta-atment in advance.There is evidence to suggest
that a person with dementia is significantly less likely than
a person with cancer to have set up advance decisions
(Mitchell et .i!, 2004).
Advanced dementia
it is not inevitable that all people with dementia will reach
(2002) describe three ways in which people with dementia
die, namely:
• People with dementia may die with a medical condition
that is unrelated to the dementia, e.g. people with tnild
dementia who develop and subsequently die from cancer
• 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
• People with dementia may die with comphcations arising
advanced dementia.
Signs and symptoms
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
309

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 of
advanced dementia and may help practitioners understand
when palliative care services should be initiated.
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
310
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 of 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 and mechanical coohng
(NICE, 2006).
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, it was antipsychotics and
antidepressants that were rated as more useful than any
other class of medication {Treloar, 2007).

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
two 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 two carers three times a day to attend to 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 to explore and discuss the palliative care needs of Mrs T and her family. Present at the 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 to request respite care at home for Sema {as she did not wish for her mother-in law
to go 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, No 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 of 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 the 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, Nu 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 be 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 be 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.
CALL FOR PAPERS
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
314
Koopmans RT, Ekkerink JL, van Weel C (2iX)3) Survival to late dementia in
Dutch nursing home patients. ¡Am Ceriatr So( 51{2): Í84-7
Kovach C R (2003) "The ones who can't complain" lessons learned about
discomfort and dementia. Alzheimer's Care Quarterly 4(1): 41-9
Lloyd-Williams M, Payne S (20112) Can niulti-disciplinary guidelines impmve
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