TIPS FOR YOU

Alzheimer’s Disease progresses in stages over a number of years.  During this time, the problems you will face in caring for someone with Alzheimer’s will also change.  Problems you face in the beginning of the disease are not the same as you will face in the advanced stage.   You will have to recognise this and adapt to the changing situation.   The solutions to problems also have to evolve.

Understanding of the patient’s condition and handling of patients:   It is very important for the families of those diagnosed with Alzheimer’s Disease or any other dementia to fully understand the patient’s condition and what to expect in the future as the disease progresses. 

1.    There is a deterioration of intellectual faculties due to a physical disorder in the brain.  This is not madness.

2.    It is very important for the family, friends, neighbours and caregivers to be very patient and understanding. Just as we show sympathy for a person with a fractured limb, a defective kidney or someone with heart problems, we need to realize that the brain also is just another organ in the body and can also get a disease.  

3.    The changes in the brain cause emotional disturbance and personality changes in the patient.   The patient is not doing inappropriate things or forgetting things deliberately. It is a condition over which the patient has no control and their actions are not intentional.

4.    Medical science has not yet been able to crack the puzzle and find a solution either. Dementia caused by Alzheimer’s disease is not reversible so far.   

5.    Patients with dementia, though on a physical and mental decline can live for up to 20 years and caring for them can be a strenuous task.   

6.    The easiest way to care for a person with dementia is to gain their trust and confidence. Losing one’s temper or shouting at the patient, will make the patient scared of you and they will not co-operate with you. 

7.    The main aim is to make a safe environment for the person, preserve their independence for the longest possible time and to enjoy and cherish them in their final years.

Safety in the home:  You have to anticipate the dangers that someone with memory problems, anxiety, hallucinations, and advancing age may face and reduce the risks just like you child proof a home when there is a toddler in the house.

 

  1. If you are living on a higher floor, ensure all windows and balconies have grills so the patient does not fall out.
  2. Lock away all chemicals like cleaning liquids, phenyl, bleaches, pesticides etc.
  3. Keep all sharp objects like knives, scissors out of easy reach. 
  4. Check that electrical appliances have a thermostat and do not leave any trailing wires that may be tripped over.
  5. Make it a habit to turn off the gas cylinder when not in use, so the patient does not accidentally turn on the gas stove and cause an accident.
  6. Install guard rails in the bathroom, provide a chair in the shower.
  7. Remove latches on the inside of bathroom doors. They may lock themselves inside and be unable to open the door and panic, or may suffer a fall and be in need of help. 
  8. Keep a spare key to the main door in the neighbour’s house.  The patient may shut the door behind you and not be able to let you back in.
  9. Remove unnecessary items from the bathroom.  The items the person needs can be laid out and given when needed.  Put away all shampoos, lotions etc at other times.
  10. Reduce clutter and furniture in the house so it is easier to move around.  Chairs for older persons should have armrests and must be high enough to get up easily.
  11. To prevent falls out of the bed, get railings installed that can be pulled up when the patient is in bed.
  12. If the person is finding walking difficult without holding on to walls and furniture, get them a walker that has castor wheels to hold on to for ease of movement.  There is a constant risk of the person falling down and breaking their bones if they walk unassisted.
  13. Ensure that furniture does not have sharp edges and that it can be easily noticed.  Eg, a dark wooden table is better than a glass top table that is less visible.
  14. Improve lighting in the bathroom and keep corridors well lit. Leave a light on for the patient in the bathroom all night so they can find it easily.  You may also lock the kitchen or any other room so they do not use it as a toilet in their confusion.
  15. When accidents do happen, do not scold or shout. They did not intentionally do it. Help them to get cleaned and reassure them.

  

Wandering:  Your patient is very likely to wander away if he /she can move without assistance.   This also means that they can get lost even if the area is familiar to them because they cannot remember where they are.  This can happen not only when you are outside, sometimes the patient may open the door and leave the house without anyone’s knowledge. This happens quite often in the initial stages, so it is better to be prepared in advance.

1.    When you take the patient out of the house, maybe for a walk or to the doctor or for an outing; always, pin on a small badge with your name, address, phone number on their clothing.  Like you would do it for your little child who goes to nursery school.  Just in case, if they do get lost it is easy for them to be returned to you.   Be prepared.
 
2.    It is always better to have another person with you when you take your patient out to hold them by the hand.  This helps if you have to stop and do something else when you are outside. A minute’s distraction is sufficient for the patient to wander away or hurt themselves.  Even a child of 10 years can help you in this, or you could hire a maid for such tasks. Be sure that the person who is watching your patient talks kindly to them.
 
3.    Inform the society watchman/security staff and explain to them that your patient is not aware of his surroundings so if they see this person leaving alone, that they should stop them and bring them back home gently.
 
4.    Lock the house from the inside with a lock and keep the key on your person – don’t leave it lying around.   It can be tiring to open the lock each time you have to open the door.  So if you have high traffic in your home of persons coming and going out the front door, use the next option.
 

5.    Install sensors on the doors that can be used to exit the house.  This is a magnetic sensor and available quite cheaply and easy to install. It will make a very audible sound if the door is opened without turning it off when it is activated. 

 
  

Aggressive Behaviour:  

At times you may face aggressive behaviour. Your dementia patient may call you names, abuse you, may even hit, pinch or kick you. Just remember that this is part of the disorder and the person is not doing this deliberately. 
             1. The best solution is to find out what triggers the aggressive behaviour and remove that trigger. The reasons
            could be the person feels humiliated, or frustrated at not being understood or in their inability to
            make themselves clear or they have lost their ability to reason and react proportionately.
            2. If you are the target of the aggression, remember to put yourself mentally out of the situation. Take a deep
            breath and calm yourself down. Do not get into an argument with the patient. Do not try to reason with them.
            They cannot understand your logic. 
           3. Don’t persist with what you want them to do. They may find your manner and tone threatening and get more upset. 
           4. Call someone else in the home to come and speak to the patient to calm them down.
           5. You can even leave the room for a few minutes if the patient is not in any danger of harming themselves.
           6. Reassure the patient gently and tell them not to be upset. Even just telling the patient softly “Calm down”,
               “Calm down” works. 
           7. Distract their attention, put on music they like or sing a song they like etc.
           8. Find out the cause for their aggressive outburst. If it is an activity that can be postponed for some time,
               they may willingly comply after some time has elapsed. 
           9. Guard your loved one against anyone (usually hired help) teasing them just for a laugh. Resentment  may
              start simmering due to such unthinking acts as the patient feels ridiculed leading to them lashing out later on.
          10. Even after all this, if the violent behaviour is very hard to manage, consult your doctor for medications.
 
  

Food and Water:  Mealtimes are going to get progressively difficult, but it can be managed.   Encourage the patient to eat on their own for the longest possible time to preserve their independence. 

 

1.    Sometimes the patient forgets they have had their meal and insists they have not been given food.  Do not get upset, just give them small servings of food whenever they ask for it or after every couple of hours instead of one big meal at a fixed time.
 
2.    While eating, they may need to be reminded to eat after every couple of bites and also cajoled like children. Sometimes they may forget how to handle a spoon. 
 
3.    Make bite sized pieces of food. Sometimes you may have to pick from the plate and place in their hand and ask them to put in their mouth.  Remind them to chew the food.
 
4.    Eventually, they may have to be spoon fed by you.  Expect the patient to take a long time over their meals.  In advanced stages of the disease the patient may require the food to be pureed as they can no longer chew and also may find swallowing difficult. 
 
5.    In later stages, the patient may start to dribble. Ensure they swallow each mouthful completely. Give them an empty spoon if they haven’t fully swallowed the food. This helps with dribbling.
 
6.    Pay attention to the texture of food that they prefer. Do not give solids and liquids mixed eg. Cornflakes in milk. Ensure whatever you give has the same consistency.
 
7.    Ensure the patient gets sufficient water.  They may not ask for water so it is easy to overlook and the patient may get dehydrated.  Fill a couple of bottles with water and place them on the kitchen counter.  Serve glasses of water at regular intervals so you know how much water they have had through the day. It is advisable to drink at least one and half litres of water per day.
 
8.    Use unbreakable plates and utensils.  They will be messy in eating.  Pin a towel to the front of their clothes. Remove all unnecessary items from the table including salt and pepper shakers as they may use it constantly making their food unpalatable.
 
9.    When serving hot beverages, it is best to warn constantly that it is hot.  If you patient has a hand tremor or is likely to drop the cup by mistake, you could hold the cup while they sip from it.
 
10.  If the patient has a tendency to get agitated, try to curtail caffeinated drinks and stimulants.
 
11.  Pay attention to food restrictions that the patient may have for other health conditions.
 
12.  Consult a doctor if vitamin supplements are required or if the patient stops eating properly.
 

13.  Constipation is often a common complaint in old persons and you will need to watch for this in your patient also.

 

Personal Hygiene: A person with dementia will need supervision and help in maintaining personal hygiene.   The aim is maintaining independence for as long as possible while ensuring cleanliness and hygiene. 

1.    Lay out all the items the person requires in the bathroom.  Hand them the toothbrush with toothpaste loaded, you will have to tell them how to do it, later you may have to guide the tooth brush in their mouth.
 
2.    To improve oral hygiene, always get them to brush their teeth before going to bed and in the morning after waking. In later stages, you may have to do the brushing for them.  In very advanced stages, the patient is unable to rinse their mouth. You may have to use a wad of sterile cotton dipped in mouthwash and alternated with sterile cotton dipped in water to wipe clean their mouth and teeth instead of brushing teeth in the normal manner.
 
3.    In male patients, encourage them to shave everyday for as long as possible, using a safety razor.  You may need to complete the task for them.
 
4.    Run the water or shower for their bath at the temperature they prefer. For safety sake, you should use a shower chair to avoid falls.  Your patient will need supervision in bathing initially.  Later on, you will have to do this for them. If the patient has inhibitions in using your assistance for their shower, you can get an ayah-nurse or ward boy to assist you for these functions.  Eventually, all dementia patients lose their inhibitions. 
 
5.    It is very important to ensure the patient cleans themselves well after using the toilet. Initially, there may be embarrassment in this for both you and the patient. But if this is not done properly, it can lead to other infections that are harder to manage.    
 
6.    In later stages, the patient becomes incontinent.  Take the patient to the toilet every couple of hours. With encouragement for urination, this problem can be managed.  You can also use incontinence pads or diapers. In male patients, urinary incontinence is easily managed at home with the use of condom catheters. However, strict hygiene needs to be maintained to avoid skin and urinary infections.  Fecal incontinence can be managed with diapers.
 

7.    Despite all care, toilet accidents will happen regularly.  Be prepared. Have a predetermined method in cleaning up and follow it for a stress free cleaning.

a.    First ensure the patient is safely seated in the toilet.

b.    Remove all soiled clothes and put them in a predetermined bin or tub.

c.     Use specifically allocated mops, cloth etc to clean up the mess.

d.    Just clean up patiently and efficiently.

e.    Do not make an issue of it with the patient, help the patient to clean themselves, and put on fresh clothes.
 
8.    Get mattress protector covers, rubber sheets to use under bed covers and to put on couches and sofas to keep damage from such toilet accidents to a minimum.
 
9.    Ensure you clip the patient’s nails regularly as uncut nails can cause problems.
 
10.  Well maintained head of hair is good for self esteem. You can either take the patient to the hairdresser or arrange for a home visit by the hair dresser. If you can, try cutting your loved one’s hair yourself, but it has to be done right.   A short style is easier to manage.
 

11.  A weekly oil massage for the entire body is highly recommended. While there are a variety of medicinal massage oils available and may be helpful, even using ordinary coconut oil or olive oil helps tremendously. This keeps the skin supple, improves circulation thereby preventing bed sores and can be very relaxing for the person.  Be sure that the massage is done in a very gentle manner.

Medical Issues: Administering medicine has to be completely monitored always.  Alzheimer’s and dementia patients have memory issues and will forget to take medicines themselves or take it multiple times.         

1.    Prepare a chart for the medicines and keep it in the medicine box/drawer for your ease. Do not leave the medicines where the patient can help themselves to it inappropriately.
 
2.    Tell the patient it is time for medicines and then bring them the medicines.
 
3.    You may have to ask them to place it in their mouth and swallow it with water.
 
4.    If the patient refuses to swallow medicines, first try cajoling them.
 
5.    In case of resistance, or if the patient is unable to swallow, you can powder the medicines using a pestle and mix it in a sweet syrup for them to swallow.  Follow up with a glass of juice to get rid of the bitter after taste.
 
6.    Get regular dental checkups done for your patient, some dentists even do home visits for immobile patients.
 
7.    Get regular medical checks done for the patient.  Many dementia patients develop other complications like pneumonia, urinary infections, peptic ulcers, age related arthritis, cataracts, eye infections, etc.  Get a family physician visit you regularly and keep their phone number on your speed dial.
 
8.    Many hospitals now have home care facilities for pathology tests so you need not take the patient to the hospital.
 
9.    In patients largely confined to bed, diapers and catheters may have to be brought into use.  Indwelling catheterization is to be done only by doctors but they can do this at home also.  A high degree of cleanliness needs to be maintained for such patients.
 
10.  Dementia patients are prone to bed sores or pressure sores, especially if left sitting or lying down for long periods of time.  These can be painful to the patient and also take time to heal.  The best way is to ensure sores do not happen -

 

-  Is by encouraging the person to walk around every two hours to get the blood circulating.
 
By changing their position frequently at night when patients are unable to turn over by themselves
 
By using loose fitting clothes, no tight bands or pyjamas
 
-  Older people have fragile skin, so when drying the skin, it should be patted down and not rubbed.
 
-  After a bath/shower, apply moisturizer liberally all over.  
 
Avoid the person becoming too hot and sweaty. 
 
Remake the bed every night ensuring the sheets are not creased.
 
Use soft cotton bed sheets over rubber sheets on the bed and ensure there is no direct contact with the rubber sheet. Change bed sheets frequently.
 
- Provide soft support cushions, or pads with rolled up soft cotton cloth where the skin starts turning red despite all care, especially bony areas of the hips, ankles, buttocks and shoulders
 
- In case blisters develop, do a dressing with an antifungal, antibacterial cream and cover with sterile gauze secured with micropore tape if the patient is confined to bed.  Such dressings are to be changed every few hours until the wound heals.
 

Activity and exercise:   It is very important that the patient has regular activity and exercise to keep the rest of their body healthy.  Also they love being able to continue to do the things that they always enjoyed before being stricken with dementia. However, it’s not easy for them to plan their days and do different tasks without your help.

1.    Ask the patient to do simple exercises along with you.  This can be like school P.T. exercises, raising arms up and to the sides and down a certain number of times.  You can also do simple breathing exercises and pranayam, depending on the patient’s capability.
 
2.    Soon patients lose their ability to read, but continue to give them newspapers and books as if they can.  Maintain an appearance of normalcy.
 

3.    Many patients can watch and follow TV shows many years into the disesase.  Be careful if the patient suffers from hallucination. Avoid wild life channels or shows that contain graphic violence.  Take care even when watching news channels.  They may get upset if they understand there has been a bomb blast or aircraft accident.

o    Eg. My Dad was very upset after the TV kept playing the 26/7 bomb blast in the local trains. It took him a week to express his fears. All he said was he wanted his children to be at home because there was trouble outside.
 
4.    When given a task they may have trouble getting started and this may cause stress. Remember, the person is not being lazy; they just need help to get started.  Remind them often what they have to do.
 
5.    They love routine.  Make a schedule and stick to it.  This is the easiest way to manage the patient.
 

6.    If the patient still resists an activity (like bathing), don’t force.  Just tell them, ‘Okay we can do this later on. Call me when you are ready’.  Leave it for a short while and keep telling them you will come and help them in a minute. They will forget anyway whatever it is they are resisting. Then come back and tell them you are here now to help because they called out for your help with the activity. (Tricks are allowed). 

o    Eg. If your patient likes to go to the temple every morning, tell them how they need to get bathed, dressed and ready to go to the temple.  They will co-operate with getting these chores done better when they know they are going to do the activity that they like.
 
7.    Patients may get listless and continue sitting in one place if you let them to do so even though they may be bored.  Encourage them to walk using a walking frame inside the house.
 

8.    Ensure that they move several times in a day from a chair placed near a window, to a couch in front of the TV, to their bed for a rest and then a walk around the house, to their chair at the dining table etc.

 

Household chores :   Doing household chores can boost the person's self-esteem. This is especially true of persons who have been involved in looking after the household for many years. 
 
1.    Let them feel they are deciding the menu.  All you have to do is consult and ask leading questions like – You like sambhar so I thought we can make sambhar today, what do you say?
 
2.    Depending on the stage of their illness, they may be able to help you cook.  Get them to help with cleaning vegetables, shelling peas etc.
 

3.    Keep up the conversation.  Tell them what you are doing and ask if they think it tastes okay.

o    Eg:  We used to get my Dad into the kitchen and show him the vegetables and what we were going to prepare. Just to get him to concur with the menu. Sometimes we even got him to help with rolling out chappatis, if only for a few minutes.  It did give him a sense of accomplishment.

o    Eg:  I always got my Dad to help me with folding clothes, though his contribution was minimal, he felt like he contributed much and was happy and content when I thanked him for helping out.

Spiritual needs:   In India, most people have spiritual needs.  This is more so in older persons. Even when a person as dementia, they should continue to be involved in spiritual activities that he or she has known well. These might include worship at the temple, performing pujas and aarti at home, singing bhajans they are familiar with, religious readings and other rituals.   It gives them a sense of normalcy.

1.    Tell people in your community that the person has Alzheimer’s Disease. Encourage them to talk with the person normally.

2.    Play religious music, bhajans or sacred chants that the person is familiar with. It may bring back old memories. Even if the person with dementia has a problem finding the right words to speak, he or she still may be able to sing songs or hymns from the past.

 

 

Children: If there are children in the family, they can help to keep the patient occupied.  The patient may also like such interaction.  The child has to be told to be kind to the patient because they have become like a baby and forgotten everything. This is true, because many times, the dementia patient has regressed into simplistic childlike behaviour.  Children can have a calming effect on people with dementia. They can also be extremely caring and patient, once they understand what’s happening.

 

1.    Encourage your kids to read or tell stories to the patients or play games with them.

2.    Kids can involve them when doing they are doing their drawing or colouring. 

3.    In the early stages most patients can remember and talk about their memories from childhood. The children may enjoy this interaction.

Music: Play music that your dementia patient enjoys.  It brings back happy memories and feelings. They may enjoy listening to or talking about their favorite music. Even if the person has trouble finding the right words to speak, he or she still may be able to sing songs from the past.

 

 

Gardening: Gardening is a way to be part of nature. If your dementia patient loved gardening, it may help them remember past days and fun times. It can help the person focus on what they can still do.  With your assistance, they can water the plants.  Ask them if they think the plants look good etc.  

 

 

Outings: Early in the disease, people with dementia may still enjoy the same kinds of outings they enjoyed in the past. Keep going on these outings as long as you are comfortable doing them.

1.    Plan outings for the time of day when the person is at his or her best.
 
2.    Keep outings from becoming too long. You want to note how tired the person with dementia gets after a certain amount of time (1/2 hour, 1 hour, 2 hours, etc.).  
 
3.    If you are visiting friends or relatives, make sure your patient is able to rest/nap there as per their usual schedule. 
 

4.    Be sure to bring them back home before they get over tired.

 

Travelling:  To take a person with dementia on a trip can be a challenge.  This is because traveling can make the person more worried and confused. Planning ahead can make travel easier for everyone.

 

Before you leave on the trip:

 

1.    Talk to your doctor about medicines to calm someone who gets upset while travelling.
 

2.    Get a note from the doctor that the person is fit to travel.  Keep this note with you in case of emergency. You may need it if airline staff may refuse to accept the person who they feel may be unsafe to travel with. 

 

During the trip

1.    You will need someone to help you at the airport or train station.   It is always best to ask for a wheelchair with attendant.  This keeps your patient from wandering and also under supervision at all times.
 
2.    Carry a copy of the medical records, doctor’s name and phone numbers, list of medicines, and insurance cards.
 
3.    Pack items the person enjoys looking at or holding for comfort.
 
4.    Take an extra set of clothing in a carry-on bag in case the patient needs a change of clothes during the journey.  
 
5.    It is best to travel with other family members or friends.
 
6.    Certainly keep reassuring the patient and reminding them that you are going on a trip and you are with them all the time.  Physical contact like holding their hand is helpful.
 

7.    Carry a recent photo of the person with you during the trip.  You can even click it on your mobile phone when you leave so you have photo with the clothes they are wearing.

 

 

On reaching your destination

1.    Allow lots of time for each thing you want to do. Do not plan too many activities.
 
2.    Plan rest periods.  
 
3.    Follow a routine like the one you use at home. For example, try to have the person eat, rest, and go to bed at the same time he or she does at home.
 
4.    Keep a well-lighted path to the toilet, and leave the bathroom light on all night.
 
5.    Avoid crowds. If not possible, eg at an Indian wedding function, keep your patient thoroughly supervised and reassured so they do not get nervous.
 
6.    Make sure there is a space where the person can rest when he or she goes to weddings or other functions.
 
7.    Do your best to enjoy yourself.  Find time for activities you like to do.  Ask relatives or other family members to spend time with the person while you're out.
 

8.    Be prepared to cut your visit short. 

Visitors:  Visitors are important to people with Alzheimer’s Disease.  They may not always remember who the visitors are, but they often enjoy the company.  

1.    Invite your friends and family when the person with dementia is at his or her best.  
 
2.    Consider giving the patient some kind of activity, such as a well-known book or photo album to look at. This can help if the person is bored or confused and needs to be distracted. Skip the activity if it is not needed.  
 
3.    You must tell the visitors to talk calmly and not use a loud voice or talk to the person as if he or she were a child.  
 
4.    Visitors must respect the person's personal space, and not get too close.  Some patients may not like it.
 
5.    Visitors should make eye contact and call the person by name to get his or her attention.
 
6.    Visitors should remind the person who you they are, else you should introduce the person to your patient.
 
7.    Explain to the visitors that they should not to take it personally if the person doesn't recognise them or is unkind, or gets angry. He or she is acting out of confusion and not doing so intentionally.
 
8.    Explain to your visitors not to argue with your patient.  Try to distract the patient by talking about something different. 
 

9.    Sometimes you may have to protect your dementia patient from unreasonable visitors. If the visitor is saying something that is upsetting to your patient, put an arm around your patient and tell the visitor to stop that conversation. 

 

Legal stuff:  In the West, there is a concept of a Living Will.  This is different from a Will in the normal sense in that it neither disposes property, nor is it operational after death. It simply ensures that all decisions for medical care and end of life are made as per the person’s wishes and not left to family and relatives. Decisions like the person’s willingness to donate organs, whether the person wants to be kept on life support etc are included in a Living Will. However, this is not yet legally accepted in India. But it is good to know their wishes so you can follow them when the time comes. If your loved one in India has dementia, you should definitely take care of the following.

 

1.    Power of attorney – This is an important legal document you need to get done for your patient in the early stages of their disease. This will help you to make decisions for care of their assets and investments when they are no longer able to make these decisions.
 
2.    Most banks have their own formats for power of attorney and you will have to fulfill these individually as well.
 
3.    Remember that the patient will be unable to even sign their name as dementia progresses. It is advisable to get their finger prints recorded at their bank when the patient is still mobile.  This helps if a ‘Live’ certificate has to be provided annually for their pension.
 
4.    Check that all bank accounts have joint names, either or survivor and nomination forms for all assets held are filled in.     
 

5.    If the nomination is not filled in, you will have to procure a Succession Certificate which is both time consuming and a hassle.

If you are a dementia caregiver, cherish every day that you have with that person.  Show them that you love them, that you are there for them and they don’t have to worry about anything. They understand what you are saying, they just can't respond the way you want.

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