Dementia Post Diagnostic Care and Support

Post Diagnostic Supports

Dementia Post-Diagnostic Support enables and assists people with dementia and their families to live a life of their choosing throughout the continuum of dementia. Post-diagnostic supports include interventions, therapeutic treatments and activities that build on strength and abilities; helping to maintain and enhance quality of life (Post Diagnostic Support Project Steering Group, 2018).

Staying connected, active and involved are also a key part of living well with dementia. Post-diagnostic care and support should be tailored to each individual’s personal needs and preferences.

You can access relevant reports and publications in relation to post-diagnostic supports below.

Further details of other key dementia post-diagnostic services and supports is provided below.

Dementia Adviser

The dementia adviser supports the person to navigate the health and social care system to ensure they receive the right support at the right time. They offer practical assistance, advice and information, as well as signposting the person and/or their families to appropriate services and supports enabling them to take control of their own lives. It is a personalised service, tailored to each individual.

Dementia Cafes

Due to COVID-19 many dementia cafes have now gone online. Dementia Cafes are an important community resource for people living with dementia and family carers. They are a key part of the dementia post-diagnostic pathway. The dementia cafe provides an informal way to meet others living with dementia and to meet health and social care professionals.

Memory Technology Resource Rooms

Memory Technology Resource Rooms are for people who would like to know more about products and devices which can help manage memory difficulties. There are currently 29 Memory Technology Resource Rooms in Ireland. Each MTRR is staffed by an Occupational Therapist who will undertake an assessment and provide appropriate advice and assistance to people living with dementia and/or families/carers.

National Dementia Service Finder

The National Dementia Service Finder will help you find local dementia-specific services as well as accessible services for people living with dementia and family carers in the community. Services can be searched by local (county) or by type of service. It is a quick and efficient way to identify local resources. Access the service finder on the Understand Together website: understandtogether.ie

There are a number of community and voluntary organisations that provide post-diagnostic support, they include:

the Alzheimer Society of Ireland: alzheimer.ie
Western Alzheimer’s: westernalzheimer.ie and
Family Carers Ireland: familycarers.ie

Dementia Post Diagnosis Information and Advice

It is important to know how much the patient wants to know. The information given to the patient should be appropriate to their stage of illness.

In the early stage of the illness patients generally need two type of information:

Information on what dementia is.
- Provide information on the illness and its natural progression. There is a document below on Coping with the Early Stages of Dementia, it was developed for use in the Irish setting and provides information on available supports.
- On the links below you will find link to a collection of short videos produced by Trinity Brain Health. These films include information on what dementia is, how it differs from Alzheimers disease and how to cope with the early stages of dementia. Direct patients to this site at http://freedemliving.com/
Information on symptom management
- Under the 'downloads' section below you will find a document produced by the Alzheimers Society of Ireland on 'Living Well with Dementia' and includes practical memory and communication tips.

Advice they might find helpful includes:

Advice on Social Welfare entitlements
The person and their carer may now be eligible for certain social welfare payments. Advise them to contact their local social welfare office.
Advice on Driving
See our Driving with Dementia page for more information (link below under further reading)
Financial Advice
The Money Advice & Budgeting Services (MABS) provide free financial advice. For more information on MABS the patient could contact them on: 0761 07 2000
Money Advice & Budgeting Services (MABS)
Short Videos on Dementia produced by Trinity Brain Health

Impact of Diagnosis

Facing and accepting the diagnosis of dementia can be a lengthy process for both the individual and their family.

The person diagnosed with dementia should be encouraged to:

allow themselves to experience their feelings which can vary from fear, bitterness, anger and despair
allow themselves to grieve
consider meeting others with dementia (see our service directory for local patient support groups)
see our patient information leaflets for coping strategies post-diagnosis

Consider the impact of the diagnosis on the family and future potential carers.

Involving Members of Primary Care Team

Consider involving other members of the primary care team in the management of this patient

Public Health Nurse - access to home-help, meals on wheels, day-care centre, access to respite care
Physiotherapy - falls risk assessment, mobility assessment, mobility aids
Occupational Therapist - assessment of the home, aids and appliances, assistive technologies
Speech & Language Therapist – communication advice, swallow assessment
Social Worker – rights, entitlements
Community Psychologist – counselling, support family carer
Community Pharmacist – medication management, dispensing

Assessment of Need

Block off a period of time to discuss the diagnosis with the person and, if the person consents, with their family - both will need ongoing support.
To make this consultation effective start by exploring the patient and caregivers current needs and then try to match them up with the resources that are available.
Mapping out their needs and having a targeted approach will focus the consultation and will provide useful information to the patient without overwhelming them.

Home Supports

Patients may find practical tips for improving time and place orientation around the home helpful. For example:

Keep a large clock and a calendar visible in the bedroom and kitchen so the person always knows what day/time it is.
Attach a sticker (where possible) to appliances such as the toaster or coffee maker describing what the appliance does and put notices on doors and cupboards as a reminder of what is inside the cupboards/behind doors.
To reinforce self-identity, place large pictures of family members and friends around the house, complete with nametags.

See PDF below for more practical tips on living with dementia.

Depending on the stage of the illness and other co-morbidities the patient may be eligible for home help. See PDF below for information for patients on the HSE care packages

If the patient or the caregiver is reluctant to accept help it may be as a result of a fear of losing autonomy. These situations can be helped by explaining to the patient, or the carer, that sometimes sacrificing a small amount of autonomy is necessary to maintain independence and to stay at home as long as is possible.

Medication Management for Dementia

Advise patients to use a medicine dispenser or to ask the pharmacist to blister pack the medications.
It is likely that the patient will have been commenced on a Cholinesterase Inhibitor e.g. Donepezil (Aricept), Rivastigmine (Exelon), Glanatamine (Reminyl)
- It is important to manage the patients and their families’ expectations of these medications. They are unlikely to see a significant improvement in memory or function on the treatment but they will hopefully see stabilisation of the person’s condition for 6-9 months.

Cholinesterase Inhibitors

Licenced for use in mild to moderately severe Alzheimer’s Disease.

Drug	Starting Dose	Titration Period	Dose Increase Per Titration	Usual Max Dose
Donepezil (Aricept)	5mg OD	4-6 weeks	5mg	10mg OD
Rivastigmine Tablet (Exelon)	1.5mg BD	2-4 weeks	1.5mg BD	3- 6mg BD
Rivastigmine Patch (Exelon)	4.6 mg/24 hr	4-6 weeks		9.5 mg/24 h
Galantamine (Reminyl) *oral solution available	4mg BD	4-6 weeks	8mg daily	16-24mg daily

Side effects:

The most common side effects are nausea and GI upset which are often dose related and improves over time or with dose reduction. The GI symptoms can occasionally be overcome by use of a topical rivastigmine patch. Less common side effects include heart arrhythmias, increased dreaming and nightmares.

Due to the potential to cause arrthymias, prior to commencing a cholinesterase inhibitor a baseline ECG is recommended – sometimes patients are on a beta-blocker and the addition of a cholinesterase inhibitor in individuals with conduction block could precipitate heart block or lead to syncope.

Memantine

Memantine is NMDA receptor antagonist, not an acetylcholinesterase inhibitor. Memantine is licensed in moderate to severe Alzheimer ’s disease. Memantine may occcasionally be prescribed in addition to an acetylcholinesterase inhibitor.

Although memantine is occasionally used to manage aggression and agitation in PwD, trials to date have not found evidence to support its use to manage these symptoms.

The maximum daily dose is 20 mg per day. In order to reduce the risk of undesirable effects, the maintenance dose is achieved by upward titration of 5 mg per week over the first 3 weeks as follows:

Example of a memantine titration schedule

Week 1 (day 1-7): 5mg OD (1/2 a 10mg tablet)
Week 2 (day 8-14): 10mg daily
Week 3 (day 15-21): 15mg daily
Week 4 on: 20mg daily

The recommended maintenance dose is 20 mg per day.

Side Effects include:

Headaches dizziness, constipation, confusion, decreased renal function.

Although memantine is generally well-tolerated, some persons with dementia, particularly those with Lewy body pathology, may be susceptible to developing adverse effects which include increased aggression, new delusions, hallucinations or agitation.

Note: In patients with moderate renal impairment (creatinine clearance 30 - 49 ml/min) daily dose should be 10 mg per day. If tolerated well after at least 7 days of treatment, the dose could be increased up to 20 mg/day according to standard titration scheme. In patients with severe renal impairment (creatinine clearance 5 – 29 ml/min) daily dose should be 10 mg per day.

How to Successfully Withdraw an Antipsychotic

In general, antipsychotics can be successfully withdrawn in people with dementia.
Many people have no worsening of symptoms when antipsychotics are discontinued and for those patients that do have worsening behaviour, most of them are effectively managed with watchful waiting.
However, there is some evidence to suggest that individuals who had higher baseline levels of symptoms or who were taking higher baseline doses of antipsychotic were more likely to have recurrent symptoms with discontinuation.
Withdrawal of anti-psychotics is most effective when a non-pharmacological intervention such as social interaction or exercise is provided in parallel.

Which patients should you attempt an antipsychotic withdrawal in?

All patients with dementia on antipsychotics for behavioural problems who have not had a trial discontinuation in the last 3 months unless:

The antipsychotic was prescribed for a pre-existing condition prior to the dementia diagnosis
The patient is under regular review by a specialist for NCS
There is a documented plan in place for ongoing antipsychotic use and this is under regular review

How to withdraw an antipsychotic

If the patient is receiving a low dose of an antipsychotic then it can be discontinued directly, there is no need to taper.

The following doses are considered low doses:

• Risperidone low dose = 0.5mg (500 micrograms)

• Olanzapine low dose = 2.5mg

• Quetiapine low dose = 50mg

• Aripiprazole low dose = 5mg

If the patient is receiving a higher dose then taper the dose over one month

Reduce to half dose for two weeks
GP review at two weeks
Discontinue immediately after a further two weeks
Review again after one week.

However in some cases if the antipsychotic is prescribed at a high dose it will be necessary to withdraw the drug more slowly.

Monitoring for re-emergence of symptoms

If the PwD is living in the community then

Ask the carer to keep a diary of the PwD’s behaviour for one week before stopping or reducing the dose and for one week after the dose reduction to assess the impact on the PwD.
Consider leaving the carer with a prescription for a small supply of the medication in case the drug needs to be reinstated, this re-commencement would need to be agreed with the prescriber

If the PwD is a resident in a nursing home then

Ask staff members to monitor the PwD behaviour closely for several weeks
Try stopping the antipsychotic in those patients that are considered the least likely to need it to give the nursing home confidence in the process.
Any stop date should usually be planned for a Monday so that if behavioural symptoms reappear these can be assessed during the working week.

What to do if symptoms re-emerge

If symptoms reappear then it may be necessary to restart the antipsychotic but a trial of ‘watchful waiting’ often results in resolution of the symptoms without restarting the antipsychotic.
If it is decided to restart the drug then it should be restarted at the usual starting dose.
NCS can persist and treatment with atypical antipsychotics may be needed in the long term but should always be reviewed on a 3 monthly basis.