Alzheimer’s Disease and related disorders, because of its lengthy and progressive nature, can be the cause of a distressing, long-lasting and often exhausting burden on the families of patients. These families may benefit from information about the disease and its complications, support and education in individual or group sessions. Doctors and other health professionals should therefore be able to inform and advise families, who in their turn, play a vital role in optimizing the care of the patient. Better understanding of the disease, it’s evolution and it’s complications, as well as accepting the disease with improved coping strategies and personal stress management will tend to improve the quality of life of both the patient and the caring family. Some studies have shown that well-informed family involvement in the overall management of patient-care can reduce morbidity (amount and severity of illness) and delay the time before a patient may need to move to a professional care setting. Family support groups are helpful either for the exchange of information or to provide a more structured educational setting. (For example, a programme of nutritional education can help prevent the weight-loss, which is a common complication of the illness). They also help families to deal with difficult and previously un-encountered problems. Support groups which focus on specific objectives have been shown to help improve quality of life for both patients and care-givers.

General Information

*Before Diagnosis : Faced with symptoms suggestive of Alzheimer’s Disease such as poor memory, slowing of activities of daily living etc and after possible non-degenerative causes have been ruled out, it is important to have a complete diagnostic assessment, with full explanation of the reasons for the various tests (possible medications, organisation of help). This enables the doctor to help the patient and family to come to terms with the disease as quickly as possible and to institute early treatment and aids which can slow the disease progression and improve quality of life.

*The announcement of the diagnosis : The diagnosis should ideally be made by a dementia specialist, who will use all the available test results and information to reach a diagnosis then instigate treatment as appropriate. The doctor will try to explain the diagnosis as clearly and precisely as possible and then to repeat and paraphrase as necessary in order to make things clearer. On first hearing the diagnosis a denial response is common. The family will need to be able to express their feelings and reactions in order to progress with their acceptance of the diagnosis and, in particular, it’s consequences. It is important that the doctor and the family (in this case often the extended family) consider carefully who will take on what roles and how burden of responsibility will be shared amongst the family members caring for the patient.
It is of course most important to inform the patient himself of the results of tests and the proposed treatment. More important than the term "Alzheimer" is careful explanation of all the aspects of the disease which will affect the patient. The doctor must also encourage the family to bring the patient into the discussion and to listen to his views on the illness.

*From the earliest stages of the illness, the doctor should mention the progressive nature of the disease and it’s complications, modulating his discussion as appropriate to how the family are coping with the diagnosis. Even at the beginning it is appropriate to discuss the eventual possibility of placement in an institution in order to avoid families becoming trapped into agreements be they verbalised or not, to look after the patient(right to the end). Faced with the need for institutional placement, the family, with this promise in mind, will have the added difficulty of feeling they are reneging on a promise. This may cause feelings of failure and guilt over the placement, and also to argument within the family.

The aim of the information provided is that difficulties be anticipated and avoided by :
1. Helping families identify and manage potentially dangerous situations, such as driving, having responsibility for children, taking medications, or more generally needing supervision at all times.
2. Giving advice about available help for activities of daily living according to the patient’s autonomy.
3. Anticipating and avoiding possible disease complications such as behavioural problems, weight-loss, loss of balance and loss of autonomy.
4. Knowledge and understanding of those particular, critical circumstances which may necessitate certain measures of legal protection. The information given must be straight-forward and practical, with all concerns and issues being aired, enabling sensible, concrete solutions. At this difficult time, families need a re-assuring structure of reference and support.

*During the intermediate stages of the disease, the doctor has an equally vital role. He may help the family to remain objective and to ensure their aims are attainable and appropriate to the patients needs regarding adaptations to his environment, better understanding his behavioural changes and avoiding a feeling of failure about the situation. The progression of the disease increases the risk of carer exhaustion which must be identified as quickly as possible so that extra help may be offered in order to improve the quality of life of care-giver and patient alike.

*The late stages of the disease may be difficult and prolonged and requires a real partnership between the professional carers and the family, whether the patient be at home or in institutional care. It will be important at this stage to plan with the family for their and the patients needs at the end of the patient’s life

Association France-Alzheimer and related Diseases

(National Union of Alzheimer’s Disease Associations)
21, boulevard Montmartre - 75002 Paris
Phone : 33 (0)1 42 97 52 41
Fax : 33 (0)1 42 96 04 70
Web site : http://www.francealzheimer.com/

Alzheimer 31

• Association locale de familles affiliated to France-Alzheimer
  2, rue Malbec - 31000 Toulouse
  Phone : 05 61 21 33 39
  Fax : 05 61 74 44 58
  e-mail : alzheimer31@free.FR

Activities :

• Meetings and reception :
• Permanences - weekly : Tuesday from 2.PM to 5.PM
  Thursday from 9.AM to 12.AM
• on appointment (tel : 05 61 21 33 39)
• Monthly meeting : the first Friday of each month from 3.PM to 6.PM
• On appointment : at the Alzheimer Center (Internal Medecine and Clinical Gerontology).
• Family support and advices since the disease is diagnosedin order to help them takink the better choice at the right time, according to specificity of each situation.
• Informations on the disease and answers to medical problems by a physician from the association and guest speakers for special meetings.

Emotional support :

• Support groups for family members and carers held by a trained psychologist, maximum 12 participants, on the basis of 11 seances of two hours.
• Groups for patients with mild Alzheimer’s Disease, with a trained psychologist, on Friday, twice a month from september to june.

Documents :

• A monthly bulletin for the members of Alzheimer 31.
• A quarterly magazine "CONTACT" printed by France - Alzheimer.
• Sheets on social and legal rights updated each year
  Three booklets on : - Alzheimer’s Disease
• The specific environment
• The activities for the patients
  Different documents regularly revised on the state art on research, treatments, legal rights, information resources and referrals.
  For sale :
• COMMENT VIVRE AVEC UN ALZHEIMER (Michèle Micas, MD) Ed. J.Lyon
• PUZZLE ? Journal d’une Alzheimer (Claude Couturier) Ed.J.Lyon
• LE GUIDE DES AIDANTS Ed..by Alzheimer-Europe
• CHERE MAMIE Ed.by Alzheimer -Europe

Cumunication and behaviorIn all cases try to understand the meaning

Chooze to :

• Stay face to face, attract attention
• Give your name
• Name the person
• Keep a normal voice tone (calming)
• Use simple sentences
• Be tolerant and positive
• get in physical touch with the person
  if he/she refuses to collaborate :
• don’t be too insistent, accept to stay apart
• suggest a derivative
  For security :
• Put away all the dangerous materials
• Don’t use physical contentions
  Avoid to :
• Speak without personifying
• Long speeches
• The " no ", the forbidding
• Situations bound to fail
• Complex words
• Depreciation
• Questionning (ie : what is my name)

Planning activities schedule (goals : patient and caregiver well-being)

• Choose simple, routine, pleasant activities
• Organise regular planning
• Emphasize physical activities
• Encourage social contacts
• Keep he/she partnership for family decisions
• Partcipitation to home activities

If behavior disorders, agitation or apathy think to :

• Medical problem :
• Pulmonary infection
• Urinary nfection
• Dental Infection
• Deshydratation

• Physical Problem :
• Discomfort In Position
• Discomfort In Clothes
• Pain

• Affective problem
• Bothering
• Depression
• Anxiety
• delusions

check temperature, regulary stools, foods and drinking
if agitation follow force or restraint situation
(bathing, toiletting...) :

• don’t argue or justify
• propose an another activity
  if the problem is persistent : call your physician

The carer of an elderly person with DAT has to be supportive to all the family ; although his or her role is tiring, stressful and sometimes depressing, he or she has to carry on.
As a carer, you have to be able to :
Share your emotions, confide in others
Take part in discussion groups, maintain links with family and friends ...
Be open about your feelings
Have the courage to say so when you can’t take any more. Don’t wait until you are exhausted before asking for help
Make life easier for yourself
Learn to solve problems by OBSERVING the sick person (notice how he or she reacts in certain situations, what makes him or her happy or aggressive ...)
Know how to delegate tasks and responsibilities
Plan ahead to prevent problems (put a card in the patient’s wallet with their name and address, carry a mobile phone in case they wander, mark the lift button so that they don’t go to the wrong floor, etc..)
Make your objectives realistic : don’t ask the patient to do more than he or she can
Adapt the environment
Keep doors locked and windows secured
Keep dangerous utensils and products (household products, cleaning fluids, medicines, matches, etc.) out of reach and conceal electrical appliances, especially in the bathroom
Use non-slip tablecloths or place mats and ergonomic cutlery Remove low tables and fix carpets to prevent falls, fit non-slip floor surfaces and make sure that stairs and dark corridors are well lit
Keep an eye on access to food and drink
Put a list of emergency numbers by the telephone (doctors, police, fire brigade, ambulance... )
Fit handles or bars in the bath and toilet to help the person to get up, put a chair or seat in the bathroom to make washing easier
Dress the patient in loose, easy clothes with an elastic waist and shoes with velcro fastening
If you have a swimming pool, make sure it is fenced and always keep the gate locked
Having shopping delivered at home can be a great help.
Give the patient meals in a room with a floor that is easy to clean
If you think the patient will try to drive even though this is not allowed, taking the sparking plugs out of the car is a good way to prevent this
Manage, coordinate, supervise

• act as a link between the family, friends and the care team
• explain your role to close family and friends
• have confidence in yourself and in your role
• find out about associations and support services
• learn about and become familiar with the disease
  Learn to adapt to the sick person
  (he or she cannot change, it is up to the carer to try to adapt)
  If the sick person
• refuses to eat sitting down : serve food that can be eaten standing up
• refuses to cooperate in washing, dressing or eating, etc. : keep calm, try again a little later ... in the meantime, why not put on some soft music, sing, dance, play card games or other games, go for a walk
  Eat balanced meals in sufficient quantity
  If possible, include : * dairy products in each meal, * meat, fish, eggs at least once a day, * raw vegetables or fruit at every meal if possible, * cooked vegetables at least once a day, * potatoes, pasta, rice or dried vegetables at least once a day, * bread at all meals, * water always available

Eating well means

• eating a variety of foods,
• at least three "proper meals" a day,
• eating neither too much nor too little,
• enjoying your food.
  If you are tired, stressed, discouraged, etc.
  Remember that your elderly relative can’t always take priority : make time for yourself (beauty care, hairdresser, gym, relaxation etc.), for resting : make use of help from the associations, of day centres, get someone to sit in at home.
  Ask your doctor, physiotherapist or psychologist for help and advice.

Practical advice for people who have difficulty in eating

Before the meal, the patient does not open his or her mouth : consult the doctor or a speech therapist ; stand in front of the patient and touch their lips gently with the spoon.
The patient refuses all food and becomes agitated : try again a little later and keep calm !
He/she stares at the food and doesn’t eat : speak encouragingly, try to help them
The patient does not seem to see the food or what is on the table : check sight with an opthalmologist.
He/she has aphtae or the mouth is dry : use a mouth wash (dentist), give plenty of fluids, icecream lollies, fruit lollies. Dip fingers of bread or rusks in fluids, serve food with sauce, or well-seasoned raw vegetables but without too much vinegar or lemon juice. Rinse the mouth often, give pastilles to suck.
The patient has forgotten he/she has already eaten : offer some grapes, a rusk, a piece of apple, a cube of cheese, etc.
In case of weight loss :

Call your General Physician
During the meal
The patient mixes everything up : give him/her each dish in turn.
The essential thing is that the meal should be eaten, it does not matter if the various foods are mixed up.
The patient eats too quickly : serve small portions, encourage him/her to slow down (verbally or by signs)
He/she does not hold the cutlery properly : special cutlery can be found in certain outlets, or see an occupational therapist.
He/she eats very slowly : heat the plate
He/she does not chew properly : check teeth and gums (dentist), prepare "mushier" food, encourage him/her to chew (verbally or by massaging the cheeks).
He/she complains the food tastes strange : check teeth and gums, marinate the meat, chicken, or fish in orange or lemon juice ; give plenty of fluids or pastilles to suck. Serve food when it has cooled or at room temperature. Make use of herbs, spices, lemon juice, mint. Check the list of medications with the doctor
The patient turns the food around in the mouth but does not swallow it : change the consistency of the food, massage the cheeks lightly, encourage him/her verbally to swallow.
The patient will not eat meat : replace it with other high-protein foods : milk desserts, baked custard, yoghurt, soufflés, boiled eggs, etc.
The patient cannot swallow : consult the doctor, a speech therapist.

Difficulty in swallowing

The patient cannot swallow : consult the doctor, an ENT specialist, a speech therapist. The food "goes down the wrong way" : gelatine, cornflour or thickening powders (from chemists) make liquids thicker and creamier ; puréed fruit can replace fruit juice and yoghurt can replace milk. Cold liquids can be thickened with biscuit, icecream or sorbet.
Other problems :
The person feels sick or vomits : give smaller, more frequent meals, ask him/her to chew slowly and longer, sip cool drinks between meals, rest after meals with the head raised, avoid too spicy, fried, fatty or strong-smelling foods ; serve food cold or at room temperature.
The person is constipated ; give plenty of fluids and high-fibre food. Physical exercise should be regular. The person has diarrhea : serve small meals (several during the day), give plenty of fluids (vegetable consommé or stewed fruit), avoid fatty and high-fibre foods.

How to make meals more nourishing

Various ingredients can be added to make meals more nourishing : eggs, ham, powdered milk, unsweetened condensed milk, baby food, grated gruyère, minced beef, sausage meat, fish, mussels, powdered protein (from chemists).
Some savoury foods which are easy to eat and easily enriched : soufflés, croquettes, rolls, baked custard, mousses (fish, meat or vegetable), white sauces (fortified milk, egg or cheese), baked gratins (fortified milk, egg or cheese), soups (added egg, ham, fresh cream or gruyère), purées enriched with fortified milk or gruyère, piperade (eggs with peppers and tomatoes), omelettes (potatoes, onions, cheese or herbs), stuffed vegetables, ravioli, lasagne, gnocchis, chicken liver meatloaf, meat croquettes, purée de courgettes, fish quenelles, quiches.
Some sweet foods which are easy to eat and easily enriched :
confectioner’s custard, baked custard, creamed rice and semolina, puddings, icecream, eggnog, bread-and-butter pudding, enriched chestnut purée + petit suisse, milkshakes.
Commercial foods with added protein (from chemists), nutritional mixtures, custards, soups, blended foods, energy bars, fruit juices with added nutrients, homogenized baby foods (meat, vegetables), powdered protein, breakfast energy foods in powder form.
Fruit juice, milkshakes or milk can usefully replace water and provide energy, vitamins, protein etc. Supermarkets now stock with the fresh dairy products a new product which is a mixture of milk and fruit juice (serve cool).

What makes a balanced diet ?

Dairy products at every meal
Meat, fish or eggs at least once a day
Raw vegetables or fruit at every meal
Cooked vegetables once a day
Potatoes, pasta or rice once a day
Bread with every meal and water always available
Food which can be eaten with the fingers :
Mixed sandwiches with a choice of lettuce, tomatoes, mushrooms, savoury olive and caper paste, chicken, cheese, sliced radishes, fresh goat cheese, potted salmon or tuna, omelette, hard-boiled egg, etc.
Sausage, cold chicken, vegetable tarts, surimi
Sticks of raw vegetables, cheese, meat or fish croquettes, gnocchis, cold chicken, sausage, quiche lorraine, pizza
Icecream, sweet pancakes, biscuits, fruit tarts, desserts.

How to measure weight

Weigh the person regularly (every month)
always on the same scales
wearing the same clothes
at the same time of day

Keeping up regular exercise

Walk for 30 min before the two main meals
or for 30 or 45 min every day before the evening meal
or for 45 min three times a week