Alzheimer’s

Yesterday he brought home a bag of lemons…

...THREE TIMES

In a disease where time matters, early detection and treatment of Alzheimer’s Disease can mean so much to patients and families¹

Most families are unaware that Alzheimer’s Disease (AD)is the most common form of dementia. It is important that family members clarify a diagnosis so that they have the opportunity to learn how to care for the person with AD and to cope with the disease. People with Alzheimer’s also have the right to know about their diagnosis so that they can make important decisions about their lives and learn to cope with changes that lie ahead.²

Communicating with the AD person

Many of the abilities that are required in good communication are diminished by AD. A great deal of human interaction depends on our ability to remember new information and to share experiences. When learning is no longer possible due to the brain’s inability to store new facts, communication becomes a daily challenge. People with AD usually make strenuous efforts to meet this challenge but fall short, no matter how hard they try.
The burden of helping them falls to others who have the capacity to change the ways in which they communicate.²
Talking and listening tips to help achieve meaningful conversations with someone with Alzheimer’s disease.²

1. Gain attention
   Greeting the person with AD by name or using a gentle touch are good ways of getting their attention. Interrupting someone in the middle of a task or a conversation may confuse that person, so it is best to wait until there are no distractions.
   
2. Eliminate background noise
   A one-on-one conversation in a quiet setting increases your chances of getting and maintaining the attention of someone with AD – eliminate or reduce distracting noises such as television, music, radio, or the voices of others.
   
3. Use nonverbal cues
   Facial expressions and body language are important sources of nonverbal communication. Looking directly at the person and smiling will help to gain and keep attention, while a gentle touch on the arm or hand provides an immediate connection.
   
4. Maintain a calm tone
   While the person with AD may not grasp the exact meaning of your words, the tone of your voice may speak volumes – learn to use a slow and relaxed tone of voice, and be aware of your attitudes and feelings, since you may unintentionally communicate them through the tone of your voice and the pace of your words.
   
5. Listen actively
   The specific words or content of an AD person’s speech may not be as important as the thoughts or feelings they are trying to express. Accessing this deeper level of meaning may be the key to understanding what is being said. Careful listening is an art that requires practice.
   
6. Encourage expression
   The person with AD may need to ‘talk around’ a topic before finding the right word or phrase. You should help someone who is clearly having this type of difficulty by supplying the needed language. At the same time it is also important to leave extra time for the person to process a thought or feeling before they come up with a response.
   
7. Encourage comprehension
   When speaking to the person with AD, make sure that you are understood by avoiding open-ended questions. Questions requiring a simple yes or no answer are more likely to be understood. Limit choices regarding food, clothes or activities to two or three items. Try to avoid expressions which may be taken literally and cause confusion e.g. “Hop in the car”.
   
8. Distract as needed
   When a person with AD asks questions or makes statements repetitively, offer a distraction such as an activity, snack or going for a walk. Distractions are a good way of calming the person when they become angry with you or are frustrated by a difficult task.
   
9. Provide reminders
   Calendars, diaries and notes can be good memory aids as long as the AD person can use them, and giving repeated reminders may ease their anxiety over forgetfulness. However, such written reminders should be stopped if they become a source of confusion. It is often better to wait until the last moment to give information about an upcoming event to avoid provoking anxiety and repeated enquiries about the event.
   
10. Help with problems
    Avoid quizzing whenever possible, instead provide solutions e.g. instead of asking “Do you remember everyone’s name?” you might say: “Here’s your nephew John, and his wife, Sharon”.
    
11. Accept silence
    Nonverbal means of communication take on increasing importance as the capacity and desire to use words diminish. Just because the person with AD does not talk as much as he or she did in the past does not mean thoughts and feelings are absent. Either you can help the person to express those thoughts and feelings or learn to accept the silence.

Preparing for Caregiving

Caregiving is defined as much by the lives of people who become caregivers as by the things that they do. Although people may question how prepared or capable they are to be caregivers, few question whether they will do it. Although it is a very stressful experience, many caregivers report that their own personal growth has advanced as a result of the caregiving experience.³

Caregivers advice to those considering caregiving⁴

• Learn as much as possible about Alzheimer’s Disease
• Get help – as much as you can afford
• Do whatever is necessary to take at least one night a week for yourself and, ideally, more time off
  

According to a caregivers survey the most challenging aspects of caregiving are:⁴

• Getting time off
• Finding affordable help
• Managing day-to-day stress
• Managing the person’s behaviour problems
• Mourning the loss of the relationship with the person
• Finding the energy to continue providing care

Who are the caregivers?⁴

• 55% are spouses, 35% are adult children, 5% are siblings, and 5% other relatives, friends, or paid companions
• 75% of primary caregivers are women
• Most typical caregivers are between 50 and 70 years old
• One-third of caregivers provide care entirely unassisted
• Caregivers spend an average of 70 hours a week in caregiving
• Half of caregivers live with the AD sufferer
• About two-thirds of caregivers say that their loved one cannot bathe, dress, or toilet without assistance
• 70% of caregivers are reluctant to leave their loved one alone even for brief periods

With Alzheimer’s Disease it is important to remember that there are two affected individuals – the person with dementia and the primary caregiver. Both have needs that must be met for the caregiving relationship to work.⁴

How do you detect Alzheimer’s Disease?

• Early stages of Alzheimer’s usually involve difficulty remembering recent episodes – such as forgetting an encounter with someone or losing or misplacing something.²
• Recent research studies have shown that changes in the brain probably occur for years before manifesting as symptoms.²
• Family members are often puzzled by the difficulties that they notice in their loved one for some time before they realize that a disease may be in progress – waiting two or three years before seeking out a medical explanation is common.²
• There is no definitive test for Alzheimer’s Disease, and diagnosis is based on three clinical features:⁴
  • Gradual/subtle onset of symptoms
  • Dementia
  • Exclusion of all other specific causes of dementia

Financial and Legal issues

• Early after diagnosis, discuss the responsibilities for financial and legal matters. The potential loss of income by the caregiver, extra expenses during care and the eventuality of placement in a residential facility all have cost implications.⁴
• Before you take responsibility for an Alzheimer’s sufferer’s financial and legal affairs, talk with an attorney.⁴
• Plan the transition as soon as possible after the diagnosis, when affected individuals can still make legally competent decisions for themselves and know where their assets are located.⁴
• Most experts in the legal aspects of Alzheimer’s recommend durable powers of attorney as the easiest, most efficient, and cheapest approach to caregiver assumption of control of the affected individual’s affairs.⁴
• If your loved one becomes legally incompetent and has not executed a durable power of attorney, in order to assume control over the person’s affairs, you need a court’s permission in the form of a conservatorship. You become the conservator and your loved one becomes the conservatee.⁴

Conclusions:

Caregivers have an awesome responsibility to ensure that someone with Alzheimer’s Disease lives life to the fullest, no matter how radically that may differ from his or her past standards. At the same time, caregivers must also make sure that their own life is kept in balance in spite of the sacrifices made every day.

Adapted from Kuhn2

Alzheimer’s - The Future

• Until recently, researchers knew very little about Alzheimer’s Disease, and an even less informed public considered it terrifying and hopeless. However, researchers are cautiously optimistic that emerging insights into its biology, risk factors, and prevention will, in the not-too-distant future, allow physicians to significantly delay its development⁴
  
• Combinations of currently available medications, new drugs in development, and the broad array of non-drug therapies and caregiver support, suggest the disease may become a reasonably manageable chronic condition within the next decade, similar to diabetes or asthma⁴
  
• It is time to move beyond the old reactions of fear and hopelessness, and although an Alzheimer’s diagnosis still remains a grim prognosis, the disease has begun to yield its secrets. That is reason for hope.

www.dementiasa.org
www.alzheimers.org.za
Alzheimer’s Disease websites

References:
• Geldmacher DS, Provenzano G, McRae T, Mastey V, leni JR. Donezpezil is associated with delayed nursing home placement in patients with Alzheimer’s Disease. JAGS 2003;51:937-44.
• Kuhn D. Alzheimer’s Early Stages – first steps for family, friends and caregivers. 2nd ed. Alameda (CA):Hunter House Inc.; 2003. 3.
• Gruetzner H. Alzheimer’s – A caregivers guide and sourcebook. 3rd ed. New York: John Wiley & Sons Inc.; 2001.
• Castleman M, Gallagher-Thompson D, Naythons M. There’s still a person in there – The complete guide to treating and coping with Alzheimer’s. New York: The Berkley Publishing Group; 2000.