INFORMATION BOOKLET FOR CAREGIVERS OF PEOPLE WITH DEMENTIA

Dementia is a debilitating illness that is treatable but NOT curable. It occurs usually in people 65 years and older, but it could start earlier and it has been reported in people as young as 35 years of age. There are four major types of dementia. 1. Alzheimer’s disease 2. Vascular Dementia 3. Lewy Body disease and 4. Fronto-temporal dementia. Alzheimer’s disease is the most common. In all of them, there is a gradual decline in memory and functioning from the time of diagnosis over a period of 7-9 years when in most people with dementia death sets in. That is why dementia is likened to cancer.

Decline in memory starts first but later the person loses some previously acquired skills in what is referred to as Activities of Daily Life (ADL). The first set of ADL affected is what is called Instrumental Activities of Daily Life (IADL). Here the individual loses ability to drive, undertake financial negotiations like writing cheques, collecting appropriate change after buying things from a store and using a phone to call family members who could assist him/her. Much later in the illness, memory problem worsens and the second type of ADL loss sets in. These have to do with personal care; that relates to ability to feed, dress and groom without assistance. All these do not need to happen at the same time and for most people, they happen gradually. Persons with dementia might even lose ability to control urine and faeces. It should be noted that not all persons with dementia will have all these symptoms. However, most have enough symptoms to produce severe distress in caregivers.

It is important for the caregiver to understand this process of decline that will take place in their wards and be prepared for it. Caring for the person living with dementia is not a duty for a single person; the whole family should contribute as much as possible. What we usually observe is that one of the children or the spouse is left to bear the burden of caregiving. It is difficult to give a general instruction about caring since the situation in onefamily differs from the next. However, it is advisable that as many members as possible should contribute to caregiving. Where possible, it could be arranged that the person with dementia is cared for by two or more children in rotation. That is the sick person goes to live withhis/her children in turns. In cases where the family can afford it, helpers could be employed to assist with caring.

One of the most important reasons why people with dementia are brought to hospitals in Nigeria is because of the manifestation of behavioural symptoms. That is probably true for most countries in Africa. Over 80% of people with dementia will develop at least one behavioural symptom in the course of their illness. Here are some of the common symptoms: anxiety, depression, apathy, elation, agitation and aggression. Others are hallucinations, delusions, appetite change and night time disturbances of various types. These symptoms often lead to nursing home placement in the technologically developed countries and they are very stressful to the caregivers.

As you begin to care for your relative with dementia, a golden rule is to remember that your own health is equally important. Do not neglect your health and seek assistance when necessary. This booklet will give you details of how to handle most of the difficult situations, but you still need to see the professional as often as necessary; professionals here are doctors, nurses, social workers, psychologists, occupational therapists, working in the field of dementia care.

Introduction

Dementia is an illness of the brain. It affects a person’s ability to remember things and think clearly which may be severe enough to cause difficulty in carrying out activities of daily living, like handling money, using telephone, bathing and eating without support. Eighty to Ninety percent of people who present in the hospital come because of the behavioural problems.

People with dementia become forgetful and easily confused. They may find it difficult concentrating and behave in odd ways. These problems progress as the illness gets worse.

Caring for a person with dementia can be stressful physically, emotionally, and financially. Becoming well-informed about the disease is one important long-term strategy.

Challenges that you may face as you care for someone with dementia include:

  • Change in communication skills
  • Change in personality and behaviour
  • Change in intimacy and sexuality
  1. Challenges in communication:
  2. Trouble finding the right word when speaking.
  3. Problems understanding the meaning of words.
  4. Problems paying attention during long conversation.
  5. Trouble remembering steps in common activities e.g. using their mobile phone.
  6. Sensitivity to touch and loudness of voices.

How to help with communication problems:

  1. Make eye contact to get his or her attention and call in him or her by name.
  2. Be conscious of the tone and how loud your voice is.
  3. Encourage two way conversation.
  4. Try distracting him or her if communication is a problem e.g. take a stroll in the neighbourhood, going through old pictures together or playing a music which the person loves.
  5. Show warm relationship.
  6. Be open to the person’s concern
  7. Let him/her make decisions and stay involved.
  8. Offer simple step by step instruction.
  • Some common changes in personality and behaviour:

Dementia affects brain cells, such that the brain works less well over time. These changes affect how a person acts. You will notice that he or she will have good days and bad days.

Challenges in behaviour:

  1. Getting upset, worried and getting angry easily.
  2. Acting depressed or not interested in things.
  3. Hiding things or believing other people are hiding things.
  4. Wandering away from home
  5. Showing unusual sexual behaviour.
  6. Misunderstanding what he or she sees or hears.
  7. Stops caring about how he or she looks and stops bathing.
  8. Wants to wear same clothes every day.

Problems that can cause change in behaviour include:

  1. Being in a place he or she doesn’t know well.
  2. Too much noise and many people talking at once.
  3. Misunderstanding signs.
  4. A person with dementia may think a mirror image is another person in the room.

How to handle behavioural challenges:

  1. Ask or say one thing at a time.
  2. Limit the size and number of mirrors in your home, and think about where to put them.
  3. Have a daily routine, so that the person knows when certain things will happen.
  4. Reassure the person that he or she is safe and you are there to help.
  5. Give people who pace enough safe place to walk around under supervision
  6. Provide comfortable sturdy shoes.
  7. Make sure they have enough to eat and drink.
  • Hallucinations and delusions:

As the disease progresses, the person with dementia may have hallucinations and delusions. During a hallucination, a person sees, hears, smells, tastes, or feels something that is not there.

He or she also may have delusions. Delusions are false beliefs that the person thinks are real. Most common type of delusion is the persecutory type; accusing people of wanting to harm, people stealing their goods, relatives wanting to poison their meals or undue suspiciousness.

How to cope with hallucinations and delusions:

  1. Try not to argue with the person.
  2. Moving to another room or taking a walk may help.
  3. Make sure the person is safe and can’t reach anything that could be used to hurt anyone or him or herself.
  4. Discuss these symptoms with the doctor or other health practitioner. Also give information about medicines that the person is taking.
  • Agitation and aggression:

Agitation means that a person is restless and worried. He or she finds it difficult to settle down. Agitated people may pace a lot, not be able to sleep, or act aggressively towards others.

They may be verbally or physically aggressive.

When this happens, try to find the cause.

For example, agitation can be caused by pain, constipation and urinary retention.

How to cope with agitation:

  1. Look for the early signs of agitations or aggression, then find the cause and deal with it before behavioural problem starts.
  2. Slow down and try to relax if you think your own worries may be affecting the person with dementia.
  3. Try to find a way to take a break from caregiving if you think your worries may affect the person with dementia.
  4. Allow the person to keep as much control of his or her life as much as possible.
  5. Distract the person with favourite snack, object or activities such as going through family pictures, watching a movie and playing or dancing to the patient’s favourite music.
  6. Inform your doctor or health care provider about these symptoms.
  7. You can opt out for respite care in a nursing home or hospital.
  • Sleep Problems:

Evenings are hard for many people with dementia. Some may become restless or irritable around the evening period. This restlessness is called ‘’sundowning’’. It may even be hard to get the person to go to bed and stay there.

How to cope with sleep problems:

  1. Help the person get exercise each day, limit naps during the day, make sure the person gets enough rest at night.
  2. Plan activities that use more energy early in the day.
  3. Set a quiet, peaceful mood in the evening.
  4. Keep lights low, reduce the noise levels and play soothing music if he or she enjoys it.
  5. Let the person go to bed at the same time each night.
  • Wandering:

Many people with dementia wander away from their home or caregiver.

How to limit wandering and prevent the person from becoming lost:

  1. Make sure the person does not leave the house unaccompanied.
  2. Wearing medical bracelet connected to GPS is very helpful.
  3. Keep the gate of the compound locked to prevent the individual from wandering out of the compound.
  4. If the person gets lost, a medical bracelet will let others know about his or her illness and to track him/her.
  • Challenges with sexuality and intimacy:

Dementia can cause changes in intimacy and sexuality in both the person with dementia and the caregiver, especially the spouse. The person with dementia may be stressed by the changes in his or her memory and behaviours. Fear, worry, depression, anger, and low self-esteem are common.

The person may become dependent and cling to the caregiver. He or she may not remember intense past relationship and fail to express appropriate feelings toward spouse/partner and children. Sometimes the person may even express inappropriate sexual feelings towards someone else.

How to cope with changes in sexuality:

  1. Explore new ways of spending time together.
  2. Focus on other ways to show affection.
  3. Try non sexual forms of touching, e.g. hugging and dancing.
  • Challenges with legal and financial issues:

When someone is diagnosed with dementia, you need to start getting his or health, legal, and financial affairs in order. It is important to help the individual plan ahead in areas of health, legal issues, (including writing a will) and financial security.

  1. You want to plan for the future, if possible, with help from the person while he or she can still make decisions. You need to review all of his or her health, legal, and financial information.
  2. Issues pertaining to entering into any form of contracts must be taken with a lot of caution.
  3. If he or she owns properties that are for lease, these must be monitored.

Legal issues:

Things to be considered include:

  1. Writing a will; this must be done at a stage when the memory does not affect ability to write a binding will.
  2. Giving advanced directives; e.g. instructions he/she will want people to carry out at stages when he/she no longer has the ability to make a decision.
  3. These can apply to health decisions, handling of finances and other social issues.
  4. People with dementia often have problems managing their money. As the disease gets worse, a person may try to hide financial problems to protect his or her independence. Or, the person may not realize that he or she is losing the ability to handle money matters.
  5. Someone should check each month to see how the person is doing. This person should ideally be a family member or a trustee. Bank cheques, ATM cards and PIN must be kept in a well secured location in the house.
  6. Register the demented elderly patient with health insurance or aid to reduce financial burden of care.

Investigations and diagnosis:

Physicians will determine tests that are essential for diagnosis, some of which include but are not limited to:

Neuroimaging-Computer tomographic Scan or Magnetic Resonance Imaging

Neuropsychological test

Fasting lipid profile

Fasting blood glucose

Electrolyte, urea and creatinine

Full blood count

Thyroid function test

Treatment

Pharmacological treatment: as prescribed by the physician.

Non pharmacological treatment: This is usually individualised. However, physical and mental exercises are general forms of non-pharmacological treatmentand these should be done regularly. Some other non-pharmacological treatment methods are reminiscing, dancing and music.

Note: Diagnosis is not a death sentence even though there will be functional decline overtime. What people with dementia need most is the care and support.

How to help yourself as a carer:

  1. Carers too also need to take care of any psychological distress they may be undergoing as it may affect their own psychological or physical health.
  2. Carers can make use of respite care and short break facilities.
  3. Carers can get support and information from helpline phone numbers and internet.
  4. There are courses (online or trainer led) on caregiving for dementia; carers can take advantage of these courses for their benefit and those of the persons they care for.
  5. Carers can call help lines dedicated to assisting dementia carers if there issues and they can advise appropriately.
  6. Ask others for help when it is needed.
  7. Join a caregivers’ support group.
  8. Take breaks each day.
  9. Spend time with friends.
  10. Keep up with hobbies and interests.
  11. Eat healthy food.
  12. Get regular exercise.
  13. See your doctors regularly.

Compiled by Geriatric Psychiatry Unit

College of Medicine, University of Ibadan, and

University College Hospital Ibadan, Nigeria.

May, 2018

Compilers:

  1. Dr. OlufisayoElugbadebo
  2. Dr. Akin Ojagbemi
  3. Prof. Olusegun Baiyewu

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