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).



What is dementia?

Dementia 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.


Dementia 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.


The 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.


Alzheimer's disease 

Alzheimer's 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.


Vascular dementia

This 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.


Other 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).


Other conditions

There 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 diagnosis.


Forgetfulness 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 Impairment.



Symptoms and behaviour

People 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.


The 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.


Early stages

The 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


Middle stages

As the disease progresses the changes are more marked and the per­

son will need more assistance in managing day-to-day living. For

example they may:


• 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 gas

• Become very easily upset, angry, aggressive or clinging

• Lose their inhibitions and behave inappropriately e.g. going outdoors in nightwear

• Become very repetitive

• Be neglectful of hygiene and personal appearance.


Later stages

In 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 may:


• 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.


All 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.



Diagnosis and Assessment

If 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.


So 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 test.


If 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 this you can request a referral.


The 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).


The 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 Services Directory).


The 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.



Anti-dementia Drugs

Anti-dementia 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.


Donepezil 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 treatment.


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.


Rivastigmine 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 disease.



Practical tips on caring for someone with dementia

Caring 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.


The following suggestions are taken from the experiences of carers and you should adapt them to your own situation and the personality of your relative.



People 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.


Words 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.



Repetition is a common symptom of dementia, usually due to the person's short-term memory loss. They may have forgotten that they have already asked the question, or are in need of reassurance.


• 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

• Reassure them.



Not everyone with dementia will have wandering habits but many do. Perhaps they feel lost, or are continuing a habit or have excess energy. The person could also be walking off some pain or discom­

fort. Usually, wandering is due to the loss of short-term memory and confusion over time of day.


If your relative is prone to wandering:

• Ensure they have some form of identification, ideally a name and phone number

• Avoid giving them medication as it can increase confusion and lead to drowsiness

• 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.



People 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.


Bathing and personal hygiene

One common symptom of dementia is a lack of interest in personal hygiene. The person may forget to bathe or may no longer recognise the need. It is important to respect the person's dignity when offering to help and their personal hygiene habits of the past.


• 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 the bath

• 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 procedure.



As the disease progresses the person with dementia will forget how to dress appropriately.

• Lay out clothes in the order they are to be put on

• Remind them which garment goes on next or hand them the appropriate clothes

• 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.



People 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 table etc.

• 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.



Once 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 others.



Community Care

Caring 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.


Health 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.


Your 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.


Health 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 services available.


After 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'.


If the person with dementia is in hospital and there are worries about how they will manage on their return home, they should receive an assessment 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 or re‑assessed.


Each 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).



Newry & Mourne Dementia Team

A 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)


The 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.

Although the GP is outside of the Dementia team s/he is closely related to it.


General 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)


The Dementia Team is made up as follows:


Consultant 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 GP. 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 support.


• 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.


• District Nurse - who provides skilled nursing care for any physical problems the person with dementia might have.


• Continence advisor - a specialist nurse who offers help and advice on problems associated with incontinence.


• Community 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 regarding the ongoing disease process of dementia. The CPN uses skilled communication, counselling and a range of approaches to promote, restore and maintain mental health and social well-being. They work closely with the Consultant Psychiatrist at the memory assessment clinic monitoring medication and any subsequent improvement.


• Occupational 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.



Services available in the Community

The 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 bathing

• 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 properly

• Carer support groups (See Services Directory)

• Alzheimer's Society Dementia Helpline (See Services Directory)

• Alzheimer's Society Outreach Service (See Services Directory)


Dementia Residential or Nursing Home Care

With 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)



Day Care Services

A 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 surroundings.


In 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.


Early Onset Dementia

The 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.


The 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.


Initial 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 bility for co-ordinating care. Based on the assessment a package of care can be provided in consultation with the client and the carer.


Services 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.



Welfare Benefits

People with dementia and their carers are entitled to certain Social Security benefits to help them care for the illness and to recompense them for any loss of earnings.


For the person with dementia

Attendance Allowance (AA)

Attendance 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

• not means-tested

• tax-free

• 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.


Disability Living Allowance (DLA)

Paid 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

• tax-free

• ignored as income for income Support (except in certain circumstances)

• 3 month qualifying period


The 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.


Community Care Grants

One-off payments from the Social Security Agency for items such as:


Replacement 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.


For the carer

Invalid Care Allowance (ICA)

you 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.


Your 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.


Community Care Grants

Same rules apply if you need help in caring for someone with dementia.


Benefits may be affected if either you or the person you care for goes into hospital for more than a short continuous stay.


For 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 Directory).



Financial and Legal Arrangements

As 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.



You 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'.


Agency 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 involves.



At 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.


You 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.


Appointees can only deal with the income from benefits, except in the case of small amounts of savings, perhaps of £500, kept for emergency purposes.


Enduring Power of Attorney (EPA)

Enduring 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 affairs.


A 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.


It is advisable to seek independent legal advice when considering what powers the donor wishes to grant their attorney.


An 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.


The 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 instead.


If 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.


The Office of Care and Protection

The 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.


The 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.


If 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.


The 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 prior approval.


The Office will charge a fee at the beginning of the proceedings and an annual administration fee, normally paid out of the person's assets.




A 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.


If 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).



Residential and Nursing Care

Although 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 decision.


Nursing 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 illness.


If 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.


Your 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.


Types 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 dementia.


When 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.


Homes 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)


Paying for full-time care

Most 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 care.


There 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 income support.


Savings 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.


Once 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.


Capital 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 disabled.


Most benefits that your relative receives are taken into account in a financial assessment. Their benefits will be affected when they enter full-time care.



Brain Tissue Donation

Brain 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 brain.


It is best to make arrangements and discuss all the issues involved well before the person is likely to die.


You 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 their condition.


When 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.


One of the incidental benefits of making a brain tissue donation is that you will receive a definite diagnosis of your relative's condition.


The 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.