Recognising and understanding Alzheimer’s disease and dementia when caring for elderly parents
Whether your parents are residing on their own or with you, you might be facing challenges and changes that are unknown to you. Although Alzheimer’s disease is not a normal part of ageing, most people with the disease are 65 years and older.
Alzheimer’s and Dementia: What is the difference?
Dementia is the general term used to describe the symptoms of mental decline in Alzheimer’s and other brain diseases. Alzheimer’s disease is the most common cause of dementia. It is a degenerative disease caused by damage of the brain due to cell damage.
Although it is normal to be devastated, overwhelmed and in a state of disbelief upon learning about a parent’s diagnosis, knowledge about what may lie ahead, can make this journey less stressful.
Caring for someone with Alzheimer’s disease.
Upon receiving a diagnosis, share the findings with your siblings and those sharing parental responsibilities. All parties involved should ideally empower themselves with knowledge about the disease. Being in denial can prevent you and your family members from formulating a much-needed short-, medium- and long-term care plan.
Caring for a parent with Alzheimer’s can be an all-consuming, intensely physical, emotional, and stressful journey. Once all involved are empowered with more knowledge about the disease, it is advisable to set out a care plan.
This can involve financial planning, deciding who the person will stay with, sharing of responsibilities, whether and at what stage the person should be moved to a care facility, researching care facilities and professional services, etcetera.
When caring for your parent with Alzheimer’s, it can be tremendously difficult to witness how your beloved parent loses their memory, becomes a stranger to you in many ways, and at times behaves disturbingly.
At some stage, nearly all people involved with caring for a parent diagnosed with Alzheimer’s feel isolated, lonely, exhausted, and overwhelmed. Having others that share the responsibility of decision-making and care will alleviate stress.
Stages of Alzheimer’s disease
In general, Alzheimer’s disease progresses slowly in three different stages: mild, moderate, and severe. Using these stages as a guideline can assist loved ones in planning for care and preparing for changes.
Early-stage Alzheimer’s (Mild)
While a person may still function independently, typical symptoms during this stage may include the following difficulties:
- Forgetting familiar words, names, information that was just read, shared, or watched on television
- Losing or misplacing things
- Battling to organise and plan
- Performing everyday tasks
Care during the mild stage
Because the person is still able to make decisions, it is imperative that you assist them to put financial, health and legal plans in place for the future so that you can assure that their wishes are fulfilled when they are no longer able to see to their own affairs.
The more you know about what to expect, the better you will be prepared. Find the Alzheimer’s Association in your area where you will be able to get support and practical advice.
To feel scared, angry, frustrated, sad and disbelieving during the early stages is normal for both the parent and family members. Although difficult, it is important to accept the diagnosis and allow yourself and your loved one time to process the news. You can benefit greatly from having someone to talk to about your own fears, doubts, and sadness, whether it be a family member, friend, or therapist.
Although your loved one may not need a lot of assistance at this stage, some steps can be taken to slow down the progression of the disease.
- Assist them to preserve their independence
- Follow up with a neurologist on treatments that are available for alleviating some symptoms
- Exercising, sleeping, and eating well
- Staying mentally and socially active
- Reducing stress
Help them to maintain independence by assisting with instead of taking over tasks. You can ask what they need help with and then assist (e.g., reminders for appointments, managing and paying accounts, taking of medication). Encourage using a calendar or notebook to assist in remembering important dates.
Avoid saying things like “Did you forget?”, ” “But I told you just now”, or pointing out their memory difficulties. Rather just repeat again and again and remember the short-term memory loss is due to the disease. Try to not interject when they are having trouble finding a word, allow them to ask you when help is needed.
Try, difficult as it may be, not to show your frustration or distress at them not being able to remember.
Middle-stage Alzheimer’s (Moderate)
This is normally the longest stage and can last for years. More care is required as damage to nerve cells in the brain causes difficulty in performing daily tasks or expressing thoughts as before.
- Gradual loss of memory may become clear in the following ways:
- Not knowing where they are or what day it is
- Forgetting their address and telephone number
- Not always recognising friends and family
- Rambling speech and communication that makes it difficult to be understood
- Wandering around and becoming lost
- Changes in communication, difficulty finding words, repeating the same things or questions, losing train of thought, using hand gestures
- Changes in mood, i.e., becoming moody, angry, withdrawn, or acting strangely
- Confusing words and/or people
- Personality and behaviour changes, i.e., becoming suspicious, having delusions or compulsive and repetitive behaviour like shredding tissues or hand wringing
- Difficulty in controlling bladder and bowel functions
- Disturbance in sleep patterns, i.e., becoming restless and confused at night, sleeping during the day
Care during the moderate stage
Because there is less independence, more support is needed with daily activities.
Changes during this stage can be distressing to see and because you might sense that you are losing the parent you knew, this can be very sad and difficult to process. You will have to adapt your expectations about what your loved one can manage and still process and accept this new reality.
You will not be able to do this on your own. Engage the help of family members, friends, or professional help to assist with daily caregiving. You could also benefit from joining a support group, as connecting with others going through the same experiences can help you to feel less scared and isolated.
Provide a sense of consistency by adhering to the same daily routine, keeping consistent times for waking up, going to bed, mealtimes, etcetera. Provide cues as to what time of the day it is, e.g., opening curtains in the morning. This can alleviate confusion and provide comfort.
Encourage your loved ones to do whatever they can, instead of taking over. They might not be able to do their buttons up but can still get dressed and undressed.
Spend time outdoors, sitting in the garden, going for a drive, or a short walk outside. Aim to stimulate different senses, e.g., playing with pets, smelling flowers, listening to music, paging through an album.
Encourage social interaction even if having a conversation is difficult. Allow them time to recall a word/name or supply help gently. Although understandably difficult, try to manage your own frustration levels. Rather take time out when you start feeling impatient.
Speak slowly and clearly, only one direction or question at a time. Keep sentences short. Be respectful by making eye contact and staying calm, and don’t use baby talk or talk over the person.
When your loved one appears to be confused or anxious, tell them who you are and where they are in a calm reassuring tone. Use distraction or avoid the truth when the whole truth will upset them. An example of this would be when they ask after a person who passed away a long time ago. Instead of explaining the person passed away, rather say “He/she is not here right now”. Should they accuse someone of stealing something (suspiciousness), or hallucinating, avoid an argument, and rather attempt to distract them.
Late-stage Alzheimer’s (Severe)
During this stage, symptoms are severe and 24-hour personal care assistance is required.
Physical and mental symptoms include:
- Loss of mobility, i.e., difficulty walking, sitting, and eventually swallowing
- Vulnerability to infections such as pneumonia
- Loss of ability to respond to the environment, have a meaningful conversation and inability to communicate their needs
- Significant personality changes
- Incontinence, mood changes, hallucinations, and delusions
Care during the severe stage
Because caregiving becomes intensive and physically challenging, you will most likely not be able to provide care on your own. As at other stages, you need time to adjust, grieve your loss, and find acceptance.
Consider transferring care to a full care facility/hospice, or hire full time professional home care.
Regardless of which option you choose or can afford, you are still able to connect with your loved one, even though they can no longer verbally communicate their love. Engage through senses, albeit talking in a calm tone, holding hands, giving hugs, playing favourite music, etcetera.
Getting professional help or taking a break does not mean that you do not love your parent. On the contrary, it will enable you to take better care of your parent.
Remind yourself often that not only are you dealing with the physical challenges of taking care of your parent, but you are also dealing with facing the loss of the parent as you once knew him or her.