Dealing With an Elderly Loved One Who Has Alzheimer’s
Commentary and advice by Eleni Fakotakis, Director of SSHQ
Before I really understood Alzheimer’s, I used to think that it could probably be a good way to go when one’s time came. Afterall, one would not remember anything, therefore, it must be easy to let go, no grudges, no memory, total oblivion and perhaps, even a sense of calm. Automatically ready for what lies ahead. The more I learn about Alzheimer’s and the more I meet families who are living with a loved one who has Alzheimer’s, I understand the devastation that this disease causes the patient, the family members and close friends.
As we live out our lives, we register moments that brought us happiness, sadness, anger, pride. We define who we are by this collection of memories, of positive and negative experiences, our sense of self. Our memories are like a photo album illustrating, reminding us of the special events of our lives, first day in school, our favourite teacher, riding our bicycle, someone who inspired us, our first love, our favorite songs, our marriage, our child’s baptism, their first steps, the look your child gave you when you pushed them on that swing for the first time, special events, awards or acknowledgements for our accomplishments, times spent with friends, our children’s graduation and successes, our new grandchild, and the list goes on.
EARLY SYMPTOMS OF ALZHEIMER’S DISEASE
When someone has Alzheimer’s disease, in the early stages, their short-term memory and verbal expression become affected, as ¼ of words in their speech will be missing, nouns are lost first. They may lose their train of thought more frequently than ever before. Family members usually get annoyed during this stage – before they realize what is really happening to their loved one, they may say things like, ‘’I just told you a little while ago, were you not listening to me again?! If your loved one does not respond to your request, do not assume they are resisting. They may not understand your request. This is very scary and confusing for the individual who has this disease.
PROGRESSED ALZHEIMER’S DISEASE
As the disease progresses, the individual afflicted with this disease will frequently put things in inappropriate places, such as their cell phone in the freezer, they will have trouble with tasks that were once quite familiar, such as meal preparation, not recognizing what the numbers on their bank statement mean, trouble with finding the right words – even simple words or substitute words, they will omit words altogether making it difficult for the person listening to understand. They will get lost on the street they live on, not knowing how they got there or how to get back home. Judgement decreases, not recognizing a medical problem that needs attention or wearing light clothing on a cold day. They will forget a lot of their memories that were once precious to them. They will not recognize friends, some family members. Such episodes will happen more and more frequently. They will not be able to read, write, drive, use their computer, dress, go to work anymore, will be prone to falls, etc. They will not use the bathroom and may go in public spaces. They will act out of character and experience mood swings. To a witness, they will appear fearful, or happy, angry, sad for no apparent reason, but in their mind, they are reliving a moment from their past or seeing something, we – the witness, cannot see. They will even become unaware that this is happening to them. Eventually, they become passive and will require prompting and special communication efforts from those around them to become involved in their day to day. Again, do not assume that the person affected by Alzheimer’s is resisting. They may not understand, they may want to respond, but are unable to find the words, or figure out the steps or control their body to do so.
WHAT IS HAPPENING IN THE BRAIN AFFECTED BY ALZHEIMER’S
Why is speech, language and the thinking process affected? There is a greater loss of brain matter on the left side of the brain – that controls language, referred to as Aphasia. There are two types of Aphasia: Wernicke’s (difficulty hearing words and comprehending language or speaking in coherent sentences, parroting or appearing to use a made-up language) and Broca’s (difficulty thinking about words and difficulty with language production and combining sounds into words, laboured and broken speech, the person is aware that they are not able to say what they are trying to say and feel very frustrated).
The right side of the brain stores our sense of rhythm and automatic responses. When the left side is very affected, the Alzheimer patient will illicit more automatic responses, stored in the right side of the brain. This is why someone with Alzheimer’s disease may be using hurtful or aggressive speech and anger or may lose their tact. Others parrot someone who is speaking to them, repeating or mirroring what is said to them or babbling instead of responding in a meaningful way.
The motor cortex is responsible for moving our body. When the cortex has been damaged, usually in the later stages of the disease, the individual will have difficulty acting on their intention. They will also have difficulty saying words.
Scientific research is continuously trying to understand what causes this disease and how it can be prevented or slowed down. Brain inflammation seems to be driving the destruction of brain cells. Current beliefs point to quality lifestyle (exercise, Mediterranean diet, keeping appropriately hydrated, keeping socially active, exercising the brain with reading and puzzles).
EARLY DIAGNOSIS IS VERY IMPORTANT
It is very important to discuss with your family doctor if you have noticed early symptoms in yourself or a loved one. Your doctor will conduct some tests with you and also send you for other more sophisticated tests. The sooner you have an accurate diagnosis the sooner an appropriate treatment regime can start. Although there is no cure, some medication can improve symptoms. Also very important is becoming informed of what resources (both public and community based) are available that can help as the disease progresses. Opening a dossier at your neighbourhood CLSC is strongly encouraged so that you can get the support you need as a natural caregiver. You will definitely need a break periodically and may need to tap into respite services, day centre services for your loved one, a support group or help-line for you. You may also want to put your loved one on a waiting list for a residence when the time arrives. In the meantime, it will also be very important to safeguard the home in order to prevent accidents (such as: eliminate clutter, install a grab-bar in the bath-tub, non skid carpets, making sure cords are out of the way, locking medicine and cleaner cabinets, using appropriate foot-ware, appropriate lighting, use of a walking aid, telephone numbers automatically set up on the phone, locking the outside door from the inside as well, fire and smoke alarm, turning the stove off during the day, making sure your loved one wears an identity bracelet and always has their home address information on them, etc). Most importantly, to make arrangements regarding obtaining a mandate of incapacity, so that you have the permanent power of attorney and authority to make decisions on behalf of your loved one. It is also time to have a discussion with other family members so that they can be involved in sharing in the care as dealing with this alone, will become increasingly more overwhelming in time.
HOW TO COMMUNICATE EFFECTIVELY WITH YOUR LOVED ONE WHO HAS ALZHEIMER’S
Communicating effectively will increasingly be a challenge. When language skills become impaired, we need to use other means of communication. Such as to:
• make eye contact
• listen first, speaking afterwards
• paraphrase what you hear and validate as much as possible
• remember that familiar phrases and meaningful words are retained the longest. So use familiar language, small talk, songs, poetry, as much as possible to get a message across
• try to recognize facial expressions, sounds, body language, gestures, visual cues, proximity, touch, as a way of interpreting what your loved one is trying to say
• give them time to respond. They may tell you that they are hungry even though, you ate together one hour ago. This may not be what they meant to say. They may just be saying that they like to spend time with you and for you to give them close attention
• look for triggers and use sensory triggers if you are going to speak about the past. Slow down, give simple, short instructions – long, drawn-out sentences will be lost and not understood Wait until the instructions have been followed before giving the subsequent instructions
• be careful about your facial expression and tone of voice. Interact with the environment so that you are doing things with the person, together
• use distraction as much as possible
• not argue, do not take accusations personally and avoid situations that will bring about arguing or disagreements
• understand that when an individual is faced with fear, they can react in one of three ways:
1. Aggressive – the need to fight
2. flight – the need to escape
3. Or they may freeze and be motionless
If the person is angry, tolerate aggressive or hurtful speech – as long as you and the Alzheimer’s afflicted individual are safe. Reassure them, help them feel safe. Keep in mind that agitation can escalate. Use distraction and redirection to control an unwanted situation or action. For example, if your loved one gets out of bed, puts on their clothes and is intending to go to work – when they have stopped working for 2 years, distract by encouraging them to have breakfast together or to help you prepare a snack.
Try to focus on one thing at a time, on a task or on a person, not both at the same time. If working on a task, embrace silence, reduce distraction, – do not block their path or be in front but rather on the side. Place task – related materials directly in front of the person. Provide visual prompts by doing the same thing in front of the individual. Direct someone by placing your hand, underneath their arm to gently steer them in the right direction.
If someone needs a shower. Do not just say, ‘’you need a shower, can I take off your clothes?’’ Do not be task-oriented, be person-centred instead. Motivate through need recognition. For example, you can say, ‘’You look cold. Can I help you warm up? I’ll heat up the bathroom, and help you into a nice warm bath’’.
Everyone has needs. The Alzheimer afflicted individual needs to have their basic physiological and safety needs met (food, water, warmth, rest, security); psychological needs are very important, this needs can be met through companionship and love. Playing music and singing together.
As natural caregivers, we also need to stimulate their sense of accomplishment as much as possible – even if we cannot see the rationale for it. This means including the individual with some daily routine activity that they are going to accomplish.
MEANINGFUL ACTIVITIES FOR PEOPLE WITH DEMENTIA OR ALZHEIMER’S
It is important to keep the Alzheimer afflicted family member busy as it is important to enhance physical, cognitive and emotional health. Activity planning should be based on their needs. Increase routine and structure as much as possible. Create a stimulating and supportive environment that recognizes emotional needs and adapts to limitations. Encourage regular physical exercise and going for walks together. It is important for the individual to experience feelings of competence. They need to do something successfully. So it is important to use the individual’s strengths and not to try to improve a weakness. Try to do necessary tasks together. Be creative. Break tasks into smaller, simpler steps. Try to add fun and friendship into the activity. Do not correct or criticize, encourage and congratulate. Modify the activities do not eliminate them at the sign of difficulty. Try to address different needs with the same activity wherever possible. The how and why you are doing something is more important than what you are doing. Like listening to music together after dinner – which would address the sense of belongingness and love needs. Activity ideas other than exercise and meal preparation include gardening, household chores, listening to music and singing together, reminiscing about past experiences, looking at photos, playing simple games, going shopping together.
CAN ALZHEIMER’S BE PREVENTED?
Alzheimer’s cannot be prevented because it is a function of age mostly. We can, however, slow its appearance by having a healthy lifestyle. Regular exercise, being on a quality diet such as the Mediterranean diet, keeping active and involved in social activities, keeping in touch with friends, exercising the brain with reading, writing, doing crossword puzzles, playing board games such as chess and other cognitive activities and puzzles.
If you need more information or support, desperately need a break, would like to receive some training on how to manage challenging behaviours better, or would like guidance regarding existing resources and what you should do to improve your situation and the situation of your loved one who has this disease, call our support and information service, the Hellenic Social Services of the Hellenic Community of Greater Montreal or SSHQ, we have offices in Montreal, Laval and the South-Shore. We offer support groups and training that you can follow through Skype as well. Call and make an appointment with the office closest to your area. Or visit our website. www.hcgm.org/socialservices SSHQ South-Shore 450-443-8197; SSHQ Laval 450-688-2091; SSHQ Montreal 514-738-2421 local 121
L’Appui helpline and website 1-855-852-7784; lappui.org
Or Contact the Alzheimer Society nearest you. Alzheimer Society of Canada 1-800-616-8816 (valid only in Canada)