Microsoft word - palliative care in dementia leaflet-vsept 2013
Hydration and nutrition
The BCUHB website has links to the documents and policies described in this leaflet.
The effects of dementia on food and fluid intake and hence
nutritional status can be considerable. Ongoing nutritional
screening and regular monitoring are important. Refer to the
Guidance on the use of the Do Not Attempt
BCUHB Adult Nutritional Support Policy for guidance on nutritional
screening and management. Consider dysphagia screening.
Cardiac and respiratory failure is an inevitable part of dying and it
Identify and address dental and oral care issues.
Palliative Care in Advanced Dementia
is necessary to identify on a case by case basis, those for whom
Cardiopulmonary Resuscitation (CPR) is likely to be unsuccessful.
Decision making surrounding nutrition and hydration management
Leaflet for Professionals
is complex and for individual patients a multidisciplinary approach
There comes a time for every person when death is inevitable. It is
is best practice (Royal College of Physicians Report. Oral feeding
therefore essential that patients are identified for whom cardiac
difficulties and dilemmas. A guide to practical care, particularly
arrest represents this natural event and for whom CPR is
inappropriate. It is also essential to identify those patients who do
Dying well with dementia includes:
not want CPR to be attempted and those who completely refuse it.
In the dying phase, a person's desire for food and drink lessens.
Continue to offer diet and fluids unless it causes distress or
The recognition that many people with dementia will also
It may well be inappropriate to consider a patient for
burden to the patient. Good mouth care is essential and may
have a co-morbidity that involves a separate life limiting
Cardiopulmonary Resuscitation if the patient is considered to be
become the more appropriate intervention rather than attempting
near the end of their life. This would include such patients with
to feed. Initiating artificial feeding is unlikely to be of overall
benefit when someone is dying and therefore will not usually be
Access to community services for all those approaching the
appropriate. Consider the risks versus the benefits of intravenous
end of life so supporting people to die in their home or
A Do Not Resuscitate (DNACPR) decision applies solely to
and subcutaneous fluids. If artificial nutrition or hydration has
CPR. It should be made clear that all other treatment and care
previously been initiated, consider the appropriateness of
which is appropriate for the patient are not precluded and
Advance care planning within primary care to reduce
should not be influenced by a DNACPR decision.
unplanned hospital admissions in the last days. This will
The decision to withhold, withdraw or continue artificial nutrition
include entering the patient onto the palliative care register
Decisions relating to CPR for those who lack capacity around the
and hydration requires ongoing individual assessment and clear
decision must involve family and carer discussions and
documentation of the decision making process.
incorporate the principles of best interests under the Mental
Diagnosis of dying and a multidisciplinary team approach.
Use of the All Wales Integrated Care Priorities for dying
Available support in older persons’ mental health
Use of the All Wales Integrated Care Priorities for
the dying patient
Symptom control of physical and mental health needs.
For the past ten years the all-Wales Integrated Care Priorities
(ICP) for the last days of life, is a tool endorsed by the Welsh
Psychosocial and spiritual support including carer support.
Bodnant OPMH team, Llandudno (West Conwy)
government and NICE to deliver high quality end of life care. The
ICP is used in hospitals, hospices, community hospitals, nursing
Duty CPN 01492 868170 Consultant 01492 868180
Care in the last days of life of someone with dementia should
have been planned once that person enters the severe
Bryn Hesketh OPMH team, Colwyn Bay (East Conwy)
stages of dementia through advance care planning
The ICP is based on evidence where available or best accepted
Duty CPN 01492 807512 Consultant 01492 807512
practice. The tool is structured around goals of care concerned
with symptom management, comfort measures, communication
Frequent and open communication with the family and/or
with the patient, their family/caregivers and healthcare
professionals, spiritual, religious and cultural requirements,
Duty CPN 01745 443194 Consultant 01745 443378
bereavement planning and care after death.
Specialist Palliative Care Team (CENTRAL)
Identification of the patient who may be entering
Communication is considered a vital aspect of good palliative care
the last year of life with advanced dementia
in advanced dementia. There must be frequent and open communication between professionals and with family and carers.
Out of Hours (Marie Curie Nursing10 pm -7am)
The following advice must be taken within the clinical
Such work is emotive and can be highly challenging. Time and
planning is needed for many of the required decisions. Proper
consideration is needed for all options and involving all those with
Firstly, ask yourself, would you be surprised if this patient
died in the next 6-12 months?
an interest in the person with dementia under the Best Interests
Version 2: Sep 2013. Review due Sep 2014
Now look for two or more clinical indicators of advanced
severe dementia, irrespective of depression. Sexual disinhibition
Progressive deterioration in physical and/or cognitive
Always prescribe a regular laxative when starting opioids
Common medications include sertraline up to 150mg daily or
Speech problems with increasing difficulty
Lactulose 5-15ml bd is the recommended first line laxative, if
fluoxetine 20mg. Mirtazapine 15-30mg can be useful for its
communicating and/or progressive dysphagia.
sedative properties if there is sleep disturbance and for its appetite
Recurrent aspiration pneumonia; breathless or
Titrate laxative to achieve optimum stool frequency and
consistency, try to use lowest regular dose
Unable to dress, walk or eat without help; unable to
Consider other factors that may affect mood such as constipation,
pain, poor mobility and falls and a lack of meaningful
3. Agitation, aggression and hallucinations
Needing assistance with feeding/ maintaining nutrition.
communication. Treatment failure, severe risks and elation of
Most episodes of agitation and aggression in severe dementia can
Recurrent febrile episodes or infections; aspiration
be managed through clear communication between the care staff,
family and patient. Communication difficulties can be challenging
to resolve if someone has lost verbal communication. However
Access to support services
meaningful interactions are often possible through the use of
Assess and plan:
Services exist to assist in preventing inappropriate hospital
pictures, textures and touch. Non-pharmacological methods such
Review treatment / care plan and medication.
admissions. All areas have access to the district nurses seven
as aromatheraoy, multisensory stimulation, music, animal assisted
Discuss and agree care goals with patient and family.
days a week but there is no overnight service and each area has
therapy and massage ought to be considered first.
Produce care plan, agreed levels of intervention, CPR
slightly differing working hours. Fast-track continuing healthcare
funding (CHC) can also be requested for those in terminal stages.
If a patient is prescribed a memory medication, consideration
Enter patient onto both the palliative care and national
Urgent social service assessments can be arranged through First
ought to given to the appropriateness of continuing that
Contact. Each area also has out of hours GP provision.
medication. This must be done through secondary care and is
Common physical and mental health symptom
Use of the Mental Capacity Act
Physical causes must be actively sought and resolved. Pain,
Use of the Mental Capacity Act is required for those with any
constipation, urinary tract infections and even relatively small
disability of the mind and brain and who are unable to complete at
changes in the environment can result in agitation.
least one of any of the four conditions with regards to making a
1. Pain control
decision-unable to understand information, unable to use or weigh
Patients with advanced dementia may not be able to directly
Carefully consider the need for blood investigations balancing the
up that information, unable to communicate at all that information
express their pain. Pain may be expressed by behavioural change
distress to the patient against risk of injury if restraint is required.
and/or unable to retain the information long enough to make an
only. Utilise a recognised tool for assessing pain in dementia such
Ask yourself, will an abnormal result change my management
Decisions needed around terminal care in dementia will likely
Follow the WHO ladder to prescribe analgesics if required. Have a
Consider the timing of agitation and alter times and dose of
require such an assessment of capacity. All major decisions for
low threshold for using regular low dose mild analgesics.
medications around those times to pre-empt such behaviour.
individuals who lack capacity must involve a Best Interests
assessment, usually with a meeting involving relevant
Common medications include trazodone 25mg nocte. Slowly
professionals and family. You must consider any previous wishes,
eg. Regular Paracetamol (max. 1g qds) or NSAID (Ibuprofen 200-
titrate but be careful of falls as it is highly sedating. Citalopram up
any advance decisions or statements and try to involve the patient
400mg tds, consider gastric protection with high risk patients).
to 20mg daily can be helpful. In acute delirium, a short course of
in the decision. Such decisions must be contextual upon the
lorazepam 0.5mg-1mg max. qds can be useful.
eg. Codeine phosphate (15, 30, 60mg qds) or Cocodamol 30/500
If these fail then refer to older persons’ mental health services
It is required in statute law that either a family member or an
(OPMHS). It is no longer advisable for antipsychotics to be
independent mental capacity advocate (IMCA) is involved in this
commenced by primary care for agitation.
decision. You must always establish whether the patient has
Lasting Power of Attorney (Health and Well Being) since the
Most pain in dementia care is not likely to require strong opioids.
It is appropriate for patients with hallucinations to be referred to
Appointee(s) will have particular authority under the Act to direct
Doses must be carefully titrated to avoid over-sedation and falls.
OPMHS. If the problem is solely about hallucinations then atypical
Transdermal patches should be used with caution and where
antipsychotics are generally preferred. Avoid any antipsychotics in
Use of covert medications
If the pain remains uncontrolled, seek specialist advice from
4. Low mood and lability of mood
Covert administration involves administering medication in food or
Problems with low mood and lability are common in advanced
drink without the patient’s awareness in those who lack capacity
dementia. This may lead to behavioural problems too. Have a low
about the treatment. A fully documented Best Interests decision
threshold for considering an SSRI medication.
will be needed after discussions with the family and others
If there are communication issues ask the carers about biological
involved, weighing up pros and cons. The pharmacist should be
symptoms such as newly disturbed sleep and change in appetite.
contacted for advice on suitable formulations.
Weight loss is not a useful indicator as that frequently occurs in
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