Assessment Communication Referral Ongoing evaluation Sensitivity Solutions
Welcome to the Alzheimer's Society N.I. ACROSS web page, in partnership with Newry and Mourne Health and Social Services Trust. This page accompanies an education and awareness initiative aimed at bridging the gap between the support available from primary health care professionals and people with dementia and their carers.
The ACROSS initiative is the first of its kind anywhere in the UK. Its aim is to further educate General Practitioners and other members of the multidisciplinary team - Social Workers, Occupational Therapists, District Nurses and Community Psychiatric Nurses - about dementia and carers needs and concerns. This page forms part of an overall programme designed to increase awareness and knowledge of dementia and improve the practices of those working with people with dementia and their carers.
Inside you will find information on common aspects of dementia and sources of support and care in your local community. For further information or advice please contact the Dementia Helpline on 028 9066 4100, or your local Society branch . (See services directory at the back of this booklet).
comes from the term "de-mentia'; loss of mind. Dementia is a general
term describing a group of physical illnesses that affect the brain
causing a progressive decline in a person's ability to remember, learn,
understand, communicate and reason.
causes a gradual loss of skills including those needed for everyday
activities and people affected can show personality changes and unusual or
distressing behaviour. However, each person with dementia is an individual
and will be affected by their dementia in a different way.
risk of getting dementia increases with age, but it is important to
realise that it occurs in the minority of older people, for example, in
the 70-74 age bracket 2.8% of people develop dementia but 972% do not.
disease is the most common form of dementia and is responsible for about
half of all cases. The cause/s are as yet unknown. This disease destroys
brain cells and interferes with how the brain understands and interprets
information. Problems can develop in reasoning, understanding and
concentration and it particularly affects the person's memory, especially
their short-term memory.
is the term given to a number of different types of dementia associated
with problems in the circulation of blood. Vascular disease causes 20% of
all cases of dementia. Arteries that supply blood to the brain become
blocked and brain tissue is damaged due to a lack of oxygen. This
condition can follow a stroke, or can appear over time through a series of
small strokes in the brain (multi-infarcts or T.I.A.'s). This disease can.
make people paranoid and irritable at times.
rarer types of dementia include Pick's disease, which affects personality
and behaviour moreso than memory, and usually occurs at a younger age, and
dementia with Lewy bodies, which affects concentration and attention and
can develop symptoms of Parkinson's disease. People with this form of
dementia commonly suffer visual hallucinations. Other rare types of
dementia are Huntingdon's Chorea, and Creutzfeldt Jakob Disease (CJD).
are other conditions with dementia-like symptoms which are treatable.
Problems such as stress, depression, vitamin and thyroid deficiencies,
diabetes, chest and urinary infections, brain tumours and alcoholism, and
the side-effects of certain drugs can give rise to confusion and
forgetfulness and can be mistaken for dementia. It is important to
eliminate all of these possibilities before considering dementia as a
and memory problems can arise in 18% of people aged 50 to 94. This is a
non-progressive and benign symptom. It is known as Age Associated Memory
who have dementia differ in the pattern of problems they have and in the
speed with which they become worse. This is not only due to the different
types of dementia but also because each person has an individual
personality and copes with their impaired abilities in different ways.
following list describes some of the features seen in people at different
stages of the illness, however, not everyone with dementia will display
all of these symptoms and they vary from individual to individual. This
list serves as a rough guide to help you be aware of the potential
problems and to allow you to plan for future care needs. The stages can
overlap and you should be aware that through all stages, short, lucid
periods can occur.
onset of dementia is very gradual with minor changes in the person's
abilities or behaviour. It may be some time before a family actually
recognise these symptoms, and they are often only identified with
hindsight. Early symptoms may include:
Confusion, forgetfulness, repetition, indecision
Loss of interest in other people or activities
Slowness to grasp ideas and unwillingness to try new things
Increased agitation, irritability or low mood
Readiness to blame others for `stealing' mislaid items
the disease progresses the changes are more marked and the per
will need more assistance in managing day-to-day living. For
Have difficulty in understanding and communicating
Forget recent events or what has just been said or done but may often
remember events from the distant past
Need reminders or help to eat, dress, wash or use the toilet
Be confused about where they are, or wander and become lost
Become muddled about time and confuse day and night
Fail to recognise people or confuse them with others
Be forgetful about safety around the home, such as failing to light the
Become very easily upset, angry, aggressive or clinging
Lose their inhibitions and behave inappropriately e.g. going outdoors in
Become very repetitive
Be neglectful of hygiene and personal appearance.
the later stages of dementia the person affected will need a great deal of
help, to the point of becoming totally dependent on others for care. They
Have little speech and little awareness of what is going on
Be unable to find their way around
Be generally unable to recognise even familiar objects or those closest to
them, although there may be flashes of recognition
Be anxious, agitated, distressed or aggressive
Strike out at others especially if feeling threatened or closed in
Seem to be searching for someone or something in their past
Be incontinent, sometimes doubly incontinent
Have difficulty in walking
Need 24-hour nursing care.
of these symptoms arise as a direct or indirect result of the person's
progressive loss of intellect and memory, and the way in which they deal
with it. Once again it is important to note that not everyone will have
all of the symptoms described and stages may overlap.
you suspect that someone you know has dementia or is confused and
forgetful it is important to persuade them to consult their GP as soon as
possible. You should accompany them to the GP's surgery.
far there is no medical test for dementia. A diagnosis is made by
excluding other conditions that have similar symptoms, (see Dementia,
Other Conditions, page 4). The GP will take a careful history of the
problem from the person's closest relatives and carers, and examine the
person's physical health and mental status by carrying out a short memory
at this point the doctor feels that dementia is a possible diagnosis s/he
should refer the person on to a consultant who will have more specialised
knowledge and experience. If your GP does not suggest
type of dementia a person has can only be confirmed with certainty through
examining the brain at post-mortem, although it is possible to diagnose
the type with a reasonable degree of accuracy through the methods
described. The consultant is also the only person able to prescribe anti-dementia
drug treatment (see Antidementia Drugs, page 9).
GP will have access to support services for the person with dementia and
their carer. Once a diagnosis has been made, your case should be referred
to your local social services Dementia Team for a full assessment of the
person with dementia's needs and your needs as a carer. (See Community
Care, page 14) You may also contact the Dementia Team directly (see
GP should arrange to see the person from time to time to assess any
changes and discuss any problems. If they do not suggest this ask for an
appointment whenever you think it might be helpful.
drug treatment has only become available in recent years after undergoing
rigorous research and trials. The two drugs available at present,
Donepezil (Aricept) and Rivastigmine (Exelon), work in similar ways. These
drugs are not a cure for dementia but can temporarily `slow down' the
progression of symptoms. Both drugs are licensed specifically for those in
the early stages of Alzheimer's disease, therefore it is important to
determine which type of dementia your relative has at an early stage.
is taken once a day and Rivastigmine is taken twice, normally in the
morning and evening. These drugs are only available on prescription
through a doctor, usually a consultant in the first instance, and
thereafter by the GP. There is no known way to predict whether an
individual with Alzheimer's disease will benefit from the drugs so it is
important to discuss with the doctor any possible benefits, side-effects
or risks. The person taking the drug must be able to consent to the
drugs can produce side-effects such as nausea and vomiting, diarrhoea,
dizziness, insomnia and fatigue, although these are usually short-lived,
and not everyone suffers the same side-effects or has them for the same
length of time. It is important to report any sideeffects to your GP
Changing from one drug to another may be the solution.
and Donepezil are not effective for everyone and will only temporarily
improve memory or delay memory loss, but scientific advances mean there
will soon be a number of drugs available for the treatment of Alzheimer's
tips on caring for someone with dementia
for someone with dementia is a difficult and challenging job. Remember
that no-one is perfect and that all you can do is your best. If you are
faced with behaviour which is challenging or difficult it is important not
just to accept the behaviour. Try to see behind it and identify the cause.
It could be something very simple which leads to a solution.
following suggestions are taken from the experiences of carers and you
should adapt them to your own situation and the personality of your
with dementia should be encouraged to communicate in whatever way seems
most appropriate. This will help improve their quality of life and enable
them to preserve their own feelings of identity for as long as possible.
are not the only means of communication. We can convey a great deal of
information about our mood and feelings by our tone of voice and
expression and through gestures and touch. Some tips to help you
communicate with your relative:
Speak to the person on a one-to-one basis, in a quiet environment
Make sure you have the person's attention before you start Tell them who
you are, use their name, and establish eye contact
Speak slowly and simply in short sentences
Allow time for the person with dementia to understand
Be a good listener
Look and listen for the meaning behind the words
Use body language
Do not argue with the person with dementia.
is a common symptom of dementia, usually due to the
Try to be patient when answering their question
Try to get them to find the answer for themselves
Try to distract them with an activity
Make an excuse to leave the room if you cannot contain your irritation
everyone with dementia will have wandering habits but many
Usually, wandering is due to the loss of short-term memory and confusion
over time of day.
your relative is prone to wandering:
Ensure they have some form of identification, ideally a name and phone
Avoid giving them medication as it can increase confusion and lead to
Do not confront them or prevent them from leaving, perhaps walk a little
way with them and then distract them and return
Place a mirror in the hall to distract them
Tell local shopkeepers and neighbours about the problem
If you find them wandering don't scold them, reassure them
If you feel that their habit of wandering is becoming a risk to their
health and safety and consult your GP, local Dementia Team, or the
Alzheimer's Society Dementia Helpline.
with dementia may appear to be aggressive if they feel frightened or
humiliated, or frustrated because they are unable to understand
or make themselves understood.
Try to find out what is upsetting the person as you may be able to
reassure them or avoid the situation arising at all
Try to remain calm (easier said than done)
Speak in a reassuring voice
Attempt to distract their attention until they calm down
Don't show anxiety or fear as the person can detect this and it will only
unsettle them further
If they are physically violent don't restrain them or crowd them. It is
better to leave the room for a few minutes.
and personal hygiene
common symptom of dementia is a lack of interest in personal
Encourage the person to wash themselves for as long as possible and try to
maintain their former routine
Try to make the experience a relaxing and pleasant one
Think about safety - wet floors, mats etc.
A shower may be easier to manage than a bath
Simplify the task as much as possible
If the person refuses to bathe, try again a little later
Ask yourself if there is a reason for his/her reluctance, for example,
perhaps the bathroom is too cold, or they may be frightened to step into
Don't worry if the person is not bathing as regularly as before, a wash
between baths can be sufficient
If the person appears embarrassed it may be helpful to keep parts of the
body covered while bathing.
Don't rush the person with dementia. Talk them through the whole
the disease progresses the person with dementia will forget how to dress
Lay out clothes in the order they are to be put on
Remind them which garment goes on next or hand them the appropriate
Avoid clothes with complicated fastenings
Give instructions in very short steps `Now put your arm through the
sleeve', for example
If they refuse, leave it for a little while
Give the person choices about what they want to wear.
with dementia often forget to eat, or overeat, or have difficulty using
utensils. In the later stages of dementia the person will need to be fed.
Encourage the person to help with the preparation of food, laying the
Be aware that the person may not be able to judge if food is hot or cold
and may burn their mouth
Make them drink enough liquid to prevent dehydration
You may need to cut up food into smaller pieces
You may find that frequent small meals or snacks are more tempting for
people who are restless or have poor appetites
Weight loss can be a symptom of dementia, but it could be a sign that the
person is not eating properly.
a person receives a diagnosis of dementia you/they must inform their car
insurance company and the Driver and Vehicle Licensing Authority (DVLNI).
(See Services Directory for details). Many people with dementia are able
to drive safely for some time after diagnosis, although are subject to
legal safeguards. As dementia progresses, the ability to drive will
inevitably be lost and law demands that driving must stop. The stage at
which this happens will be different for each person with dementia and
they may require encouragement from friends and family to give up driving.
This can be a very difficult issue to overcome but it is a crucial
consideration for the person with dementia's safety and the safety of
for someone with dementia can be physically and emotionally draining and
you will require extra help from time to time. Once you receive a
diagnosis it is crucial to inform social services of your situation as
they can access practical sources of support for you.
and Social Services Trust departments have a legal duty to carry out
assessments for people it believes to be in need of services and to assess
disabled people. If a person is diagnosed with dementia they are entitled
to an assessment. Based on this assessment your care manager will discuss
with you the best way of meeting these needs.
case can be referred to the local Dementia Team by the GP or by yourself.
A member of the Dementia Team will visit your relative at home to carry
out an assessment of needs. Other professionals like the GP, Occupational
Therapist, or Community Psychiatric Nurse are often asked to contribute to
the assessment process. It is best if you are present to give a more
rounded picture of the situation and to express your preference for the
most suitable services for you and your relative.
and Social Services Trusts can charge for some services so questions will
be asked about the person with dementia's financial circumstances to see
how much they will be able to pay, if anything at all. The procedures for
charging and the amount charged will differ from area to area as will the
the assessment is complete the care manager will devise a care plan
outlining what help is to be provided, when and by whom. This is known as
a `care package'.
the person with dementia is in hospital and there are worries about how
they will manage on their return home, they should receive an
before they are discharged. As the person with dementia's situation
changes and their needs increase the care package will need to be
reviewed. This should happen on a regular basis, and social services
will make an appointment for you. If this does not happen you should ask
for a reassessment if your or your relative's circumstances change. As a
carer your views should be consulted and your needs taken into account as
your ability to cope reflects directly upon the person you are caring for.
Under the Carers (Recognition and Services) Act 1995 you have the right to
a separate assessment of your needs when your relative is being assessed
Health and Social Services Trust has a complaints procedure, which you can
use if you are not happy with any aspect of the services provided, or
you can contact the Health and Social Services Council, which is an
independent complaints body. (See Services Directory for details).
& Mourne Dementia Team
variety of health care professionals have responsibility for meeting the
needs of people with dementia and their carers living in the community.
They come together to form the Dementia Team. Referral to this team is
dependant on your relative having a formal clinical diagnosis. Referrals
to the team are received from GP's and other Health and Social Services
Trust staff. Enquiries are also welcome from the person him/herself,
their relatives/carers, or from the general public. (See the Services
Directory for details)
team meets on a fortnightly basis to discuss the best way of meeting the
needs of those people newly diagnosed with dementia. As well as this, each
person with dementia in Newry and Mourne, known to the team, have their
needs reviewed at least once a year. This is to make sure the services
being provided continue to be useful and to identify any new
problems/needs which may have arisen. As a carer you have a valuable
contribution to make in this review and your views will always be sought.
the GP is outside of the Dementia team s/he is closely related to it.
Practitioner (GP) - the first person to contact if you are worried that
your relative is becoming confused or forgetful. The GP can refer your
relative for specialist assessment by the Consultant Psychiatrist or other
members of the dementia team. (See Diagnosis and Assessment, page 8)
Dementia Team is made up as follows:
Psychiatrist - who has specialist knowledge of dementia and can prescribe
anti-dementia drug treatment. There is a memory clinic twice monthly to
which your GP can refer. There are follow-up memory clinics and a shared
care programme with the
The Consultant works with the multi-disciplinary team i.e. Care Managers,
Occupational Therapists and Social Workers.
Dementia Care Managers (Health and Social Services Trust) - come from a
variety of professional backgrounds e.g., psychiatric nursing and social
work. Their job is to make sure your relative's needs are properly
identified and then to look at ways of meeting those needs if possible.
Obviously they will enlist the skills and expertise of other members of
the dementia team. However, both you and your relative are important
contributors not just in explaining your needs but also in saying how you
would like them met. The dementia care manager not only offers practical
advice but is a useful source of emotional support and information, he or
she can also put you in contact with other professionals or organisations
like the Alzheimer's Society who are also in a position to offer this
Social Workers (Health and Social Services Trust) - who have all undergone
specialist training in mental health issues and are `Approved' to practice
under the Mental Health Order. They can offer you and your family
counselling and support in dealing with some of the problems a diagnosis
of dementia can present for those concerned. Families often differ in how
they cope with the knowledge that their relative has dementia. Within
families people can also cope in different ways and at different levels
which can sometimes lead to frustration and conflict. Advice and support
is available for you and your family should you find yourself in this
situation. Social workers are skilled and trained in working with families
to resolve difficult issues. The social worker can also offer information
and support on legal and financial matters and can put you in contact with
some more specialist advice. More detailed information on this is
contained in the section `Financial and Legal Arrangements' on page 25.
Nurse - who provides skilled nursing care for any physical problems the
person with dementia might have.
advisor - a specialist nurse who offers help and advice on problems
associated with incontinence.
Psychiatric Nurse (CPN) - develops a close relationship with people who
have dementia, their families and carers in their own home. They provide
information and support to carers
Therapist (OT) - can offer practical advice and support to help people
overcome their physical or mental limitations, for example, by providing
aids and equipment which increase independence and offering carers advice
on managing risk.
available in the Community
dementia care manager will be able to advise you as to what services may
support you and your relative. As every situation is different it will
first be necessary for the care manager to identify your relative's needs.
Once this assessment is completed he/she will talk to you about which
services might be of most assistance. These services may include:
Information and advice
Practical or personal care at home, including help with housework or
Attendance at a specialist day centre
Respite care for short periods in a residential or nursing home to give
the carer a break
Home sitting service day or night, to allow the carer to go out or to rest
Carer support groups (See Services Directory)
Alzheimer's Society Dementia Helpline (See Services Directory)
Alzheimer's Society Outreach Service (See Services Directory)
Residential or Nursing Home Care
the support of family and professionals, many people with a diagnosis of
dementia are able to remain in the community. However, for some people it
may be necessary to consider long-term care. Again this is something the
dementia care manager can help you with should that time approach. (See
`Residential and Nursing Care' page 29 for further information)
good quality day care service for people with dementia provides a safe,
therapeutic environment where the assessed needs of each client is met as
fully as possible, helping them to maintain their independence. Equal
consideration is given to the social, emotional and physical needs of each
person and a range of activities are provided to meet these needs. These
include health and personal care, social activities, mental stimulation
activities, maintenance of individual skills and opportunities to access
other non-dementia health and social services. The emphasis is on
providing activities that are therapeutic in nature but which are
presented in an informal, friendly way by caring staff in homely
addition to caring for people with dementia, information and support is
given to relatives/carers and this day `respite' service gives them
valuable `time out' from their continuing caring role.
Mental Health Department provides a wide range of services to meet the
needs of people with early onset dementia, i.e., people under the age of
65. Services are based on individualised assessments using a mufti-disciplinary
approach. The assessment includes input from the Consultant Psychiatrist,
Social Worker, CPN, OT and GP.
Department recognises the problems and difficulties which early onset
dementia brings to both the person and the family in the early stages of
the illness. Our services aim to provide individualised packages of care
to help overcome these problems and difficulties.
assessment can be commenced either at the out-patient department or in the
client's home, if they are unable to come into the department. A key
worker is appointed to take overall responsi
provided can include:
Assistance with dressing and personal care
Sitting services to allow carers a break
Home Help and assistance with practical tasks
Meals on Wheels
Nursing Home or Residential Home care for short term beaks or longer stays
Day Care - with transport, meals and social activities
Medication individually prescribed by the Psychiatrist and/or the GP and
monitored in conjunction with the Community Psychiatric Nurse.
with dementia and their carers are entitled to certain Social
the person with dementia
Allowance is paid to anyone who needs help with personal care, or who
needs supervision in case of risk. It is:
for people aged 65 and over and is payable for life
ignored as income for the purposes of Income Support
6 month qualifying period
The person with dementia must be capable of understanding what they are
signing. The doctor is the best person to decide this. If the person is
not mentally capable the carer can fill it out on their behalf
Rates of payment differ depending on the person with dementia's needs.
Living Allowance (DLA)
for the same reasons as Attendance Allowance, but this benefit can also be
paid if the person with dementia needs help getting around outside the
home, or if they need help making meals. It is:
For people under 65 and is payable for life
not means tested
ignored as income for income Support (except in certain circumstances)
3 month qualifying period
person's mental capabilities must be taken into account as before Made up
of two components - care component - if the person needs help with
personal care - mobility component - if the person needs help to walk
There are different rates payable in each component depending on the
amount of help the person needs.
payments from the Social Security Agency for items such as:
cookers, beds and bedding, clothes, furniture, minor decoration. The
person must be on Income Support The person must not have capital or
savings over £500 if under 60 or £1000 if aged 60 or over.
Care Allowance (ICA)
are looking after someone who has dementia you may be entitled to this
benefit. It is an `earnings replacement benefit' and so is only payable to
those of working age.
relative must be in receipt of, or have applied for, Attendance Allowance
or Disability Living Allowance You must be between 16 and 65 Caring for
35+ hours a week Not earning more than £50 a week Not in full-time
education (21+ hours supervised study a week) ICA is counted as taxable
income It can reduce your Income Support, although a Carers Premium can
top up the payment. It is not always worth claiming ICA for this reason
Can also affect Housing Benefit.
rules apply if you need help in caring for someone with dementia.
may be affected if either you or the person you care for goes into
hospital for more than a short continuous stay.
advice on Social Security benefits or if you need help to apply contact
the Benefits Enquiry Line, your local Citizens Advice Bureau, the
Alzheimer's Society, or the Welfare Rights Association. (See Services
and Legal Arrangements
dementia progresses the person you are caring for will become less able to
manage their financial affairs. You may then have the task of making
arrangements on their behalf. There are a number of procedures and
safeguards you can undertake, some quite informal.
can become an agent for your relative to enable you to collect their
pensions and benefits. Your relative should inform the local benefits
agency of your name so that an authorisation can be put into the order
book. You will then become the `authorised agent'.
may be useful in the early stages of dementia when the person is still
able to understand that they are appointing an agent but may be hesitant
about going to the Post Office on their own. A person cannot make a valid
appointment of an agent once they are too confused to understand what this
some stage it will become apparent that the person with dementia is no
longer able to handle their weekly income. Through a system known as `appointeeship'
you can claim their benefits and administer them in the person's best
interests, by ensuring that essentials are paid for.
must inform the local benefits agency that you wish to become an appointee
by filling in the relevant form. Contact the Benefits Enquiry Line on 0800
220 674. On receipt of the form the benefits agency officer may ask for
medical evidence to confirm that the person with dementia can no longer
act for themselves. The officer should then visit you to check that you
are a suitable appointee and explain your responsibilities.
can only deal with the income from benefits, except in the case of small
amounts of savings, perhaps of £500, kept for emergency purposes.
Power of Attorney (EPA)
Power of Attorney is a very sensible option for anyone to consider when
planning for the future, particularly if there is concern about a person's
future mental capacity. It enables you to give a person or persons (an
attorney) legal authority to deal with your (the donor's) property and
person can only grant an EPA if they are capable of understanding what it
is and what it is intended to do. It is still possible for a person to
grant an EPA after they have been diagnosed with dementia as long as they
are still fully aware of what it involves. A doctor can decide upon their
state of mind and should witness their signature. An EPA form is
obtainable from a solicitor, and has to be signed by the donor, the
attorney and an independent witness.
is advisable to seek independent legal advice when considering what powers
the donor wishes to grant their attorney.
Enduring Power of Attorney allows the attorney to sign cheques, withdraw
money, buy or sell houses, or pay for the donor's full-time care on the
donor's behalf. They also have the power to make gifts to people that the
donor ordinarily would have. Once the donor has become or is becoming
mentally incapable the Power must be registered with the Office of Care
and Protection at the High Court in Belfast and the donor and close
relatives notified of the registration.
Office of Care and Protection does not monitor the way the attorney acts
under the EPA. However, it will consider complaints from anyone who
objects to the way the attorney is acting and then decide whether that
person should remain an attorney or whether a receiver should be appointed
an Enduring Power of Attorney has not been made before your relative
becomes mentally incapable it is advisable to apply to the Office of Care
and Protection to ensure that whoever acts on behalf of the person with
dementia does so with full legal authority.
Office of Care and Protection
Office of Care and Protection exists to protect the property and financial
affairs of people who, because of mental disorder, cannot manage their own
affairs. The Office is the department of the High Court that deals with
the administration of power under the supervision of the Master, a
judicial officer of the Court.
Office will appoint a `controller' to deal with the day to day management
of the person with dementia's financial affairs. The controller is usually
a relative or friend, or perhaps a professional such as a solicitor. If
this is not possible, the Office can appoint its own Official Solicitor.
the Office is satisfied that there is a need for a controller to be
appointed, it will consider medical evidence confirming the person's
incapacity and then make an order to appoint a controller. The order gives
details of the specific powers conferred on the controller which are
usually quite limited.
controller must judge what the wishes might have been of the person with
dementia and act in their best interests. They are accountable to the
Office of Care and Protection for the way decisions are taken and how
money is spent and any financial transactions or legal proceedings need
Office will charge a fee at the beginning of the proceedings and an annual
administration fee, normally paid out of the person's assets.
person with dementia may still have `testamentary capacity' - that is, the
legal capacity to make or change an existing will. The solicitor will make
a decision on this, often after taking medical advice.
the person no longer has testamentary capacity because of the progress of
dementia, they cannot make or change a will. No one else can do so on
their behalf apart from the Office of Care and Protection which, in
certain circumstances, can make a statutory will. For further information
contact the Office of Care and Protection (see Services Directory).
and Nursing Care
many people continue to care for their relative at home even when their
dementia is in a very progressed stage, most people come to a point where
they can no longer manage. It is wise to plan ahead for this circumstance,
as you will then be able to take appropriate steps before a crisis
occurs and have time to come to terms with what can be a very upsetting
and residential care can be arranged through your local Health and Social
Services department. An assessment of your situation by a care manager
will indicate whether your relative should enter full-time care. The care
manager will take into consideration the amount of community services
available to enable you to continue caring at home and your own
abilities to cope with the demands of a person in the later stages of the
caring at home is no longer feasible the care manager may recommend full-time
care. You are under no obligation to act on their recommendation but if
you do wish to continue to care at home you must investigate and ensure
that there is adequate and appropriate support for you to do so.
care manager can provide you with the Southern Health and Social Services
Board Care Directory which includes a list of suitable homes that you are
usually free to visit on appointment. If you have a preference for a
particular home this may be negotiated with the Health and Social Services
Trust. However, if your relative is selffunding full-time care they have
a complete choice of home depending on availability and suitability.
of home Residential homes cater for people who are still mobile and who do
not require nursing care, and perhaps have a mild level of confusion.
Nursing homes provide nursing care for people who are disabled in some
way, or who may be mildly confused. However, not all homes are able to
deal with the often complex needs of people with dementia. If your
relative has advanced dementia or exhibits `problem' behaviour, such as
wandering or aggression, the most suitable home would have an EMI unit, or
caters specifically for EMI patients. EMI stands for Elderly Mentally
Infirm, in other words - dementia, often with behavioural problems. Such
homes have trained psychiatric nurses who will be able to look after
your relative's mental health as well as physical health care needs, and
are designed and equipped in a specialist way to deal with people with
you are investigating homes for the future it is worthwhile asking if
the care staff have specialist training in dementia, ideally with
accreditation from the Alzheimer's Society.
for older people are either owned by the Health and Social Services Board,
private companies, individuals, voluntary organisations, or religious
orders. All homes undergo regular inspection by the Registration and
Inspection Unit. (See Services Directory)
for full-time care
residential and nursing homes cost around £300 - £400 a week. Your care
manager will assess your relative's financial situation when they make a
recommendation for full-time care. This assessment is quite complex and
you should seek independent advice from the Alzheimer's Society, or your
local Citizen's Advice Bureau before your relative goes into full-time
are a number of payment rules relating to the income and savings of
someone going into full-time care. If your relative has capital or savings
of more than £16,000 they will be expected to meet the full cost of their
fees. Once their capital and savings are reduced to £16,000 or less, they
become eligible for help from social services or through higher levels of
of between £16,000 and £10,000 will be taken into account in assessing
the person's contribution to the cost of care. The person's spouse may be
asked to contribute, but no other relative is liable for any costs. If you
have been asked to contribute you may wish to consult your local
Citizen's Advice Bureau, or get legal advice.
a person's capital is reduced to £10,000 or less they are no longer
expected to contribute to the cost of full-time care.
may include the value of the family home unless it is occupied by the
person's spouse, or by a relative who is under 16 or over 60, or who is
benefits that your relative receives are taken into account in a financial
assessment. Their benefits will be affected when they enter full-time
tissue donation is a concept that requires careful consideration and
family consent. Researchers are interested in receiving tissue from the
brains of people with all forms of dementia as well as normal brain
tissue. It provides valuable research opportunities and scientists are
very grateful for the generosity of families who donate their relative's
is best to make arrangements and discuss all the issues involved well
before the person is likely to die.
should contact the Department of Neuropathology at the Royal Victoria
Hospital in Belfast (see Services Directory) to inform them of your
decision. The centre will then ask your relative's doctor for details of
your relative dies the pathologist will need to remove their brain tissue
within 48 hours of death, so you must contact the Department as soon as
possible after your relative dies. They will make arrangements to collect
the brain tissue. The costs of arranging a donation, such as transporting
the body, can be covered by the Alzheimer's Society.
of the incidental benefits of making a brain tissue donation is that you
will receive a definite diagnosis of your relative's condition.
operation to remove brain tissue is carried out in a sensitive and
unobtrusive way, so much so that your relative's body will not show any
signs of the operation.