Caring for a Parent with Dementia at Home

Caring for a parent ageing in place is a complex task. When dementia care is part of the picture, it becomes a lot more difficult. Cognitive and behavioural changes from dementia can occur unpredictably and parents may resist in home care and other aged care services.

If you are a carer for someone with dementia, the most important thing is to first understand the disease. Although Alzheimer’s disease is just one type of dementia, it is the one with the most pronounced stages. Alzheimer’s is a progressive condition, meaning symptoms increase in severity as time goes on.

People with Alzheimer’s typically live four to eight years after the disease is confirmed. Although some may live with the disease for up to two decades. If you are familiar with these stages it will help you to identify the behaviours your loved one is exhibiting, learn how to address them, and how best to update his or her primary care doctor and home care assistance services.

Three Major Phases of Alzheimer’s Disease

The brains of people who are later diagnosed with Alzheimer’s begin changing a long time before disease symptoms appear. This is called the preclinical phase of the disease.

Alzheimer’s Association defines thethree stages of Alzheimer’s disease as:

1. Mild (early stage): During the initial phase of Alzheimer’s, your loved one might still live independently, without the need for in home care services. That may include working, driving and participating in a social life. But the person might sense that something is different. They may

1. Forget recent events or the names of familiar people
2. Have difficulty with numbers
3. Lose the ability to plan and organise events
4. Have trouble making a grocery list or finding items in the store

2. Moderate (middle stage): Moderate Alzheimer’s tends to last longer than the other stages of the disease. In some cases, people can remain in this stage for a number of years. Symptoms include:

1. Increased memory loss
2. Confusion
3. Trouble paying bills or following instructions
4. Difficulty getting dressed
5. Cursing, kicking, or screaming
6. Wandering and becoming restless

3. Severe (late stage): This is the last stage of Alzheimer’s. People in this last stage often show:

1. A need for 24/7 care for all their daily needs
2. Trouble walking or sitting up without help
3. Trouble eating or swallowing
4. Major changes in personality

Dementia Care at Home: A Step-by-Step Care Plan to Maintain Quality of Life

As the disease progresses, so will the in home care needs of your loved one. You can care for the physical needs of your loved one by closely coordinating care with his or her doctor and other aged care providers. Just as important is your ability to remain a carer for the long term. Having a strong care team by your side can make this easier.

Making a home safer

When a person transitions from the mild stage of dementia to the moderate stage, you may need to make some changes within the home to reduce fall risk. With a little resourcefulness and a lot of patience, you can provide your loved one with the benefits of ageing in place, plus an added layer of safety.

Here are some things to consider:

• Assess the situation. Some parts of the home are more likely to present problems for your mum or dad’s safety. Take a close look at areas like the garage, workshop, basement and yard. Be sure that tools, cleaning supplies, chemicals, etc. are safely stored and out of harm’s way. Your in home care agency can also provide an assessment as part of their in home care services.
• Prevent kitchen catastrophes. You might want to make sure your loved one with dementia can’t turn on the stove when you’re out of the room. Options include installing a concealed gas valve or simply taking off the knobs. You might also install appliances that shut off automatically. Scan kitchen countertops and tables for items like decorative fruits and bottles of seasoning. It’s best to remove these items.
• Safety by numbers. Make sure you have emergency phone numbers and addresses for emergency services handy. Ensure these are shared with your in home care services.
• Extinguish emergency situations. Regularly check fire extinguishers, smoke detectors, and carbon monoxide detectors to make sure they are working properly.
• Side-step bathroom issues. Think about the merits of a walk-in bath or shower. Add grab bars inside the show or bath, adjacent to the toilet, and near the vanity. Use safety stickers to make slippery surfaces safer.
• Well-lit rooms and walkways. Don’t keep your loved one in the dark. Shine a light on entrances, staircases, doorways, hallways and bathrooms. A strategically placed nightlight might stop an accident before it starts.
• Special considerations. Other suggestions include putting away rugs and installing locks or latches. Some people living with dementia may require the bedroom to be have a toilet.

Do your research

Caring for someone with dementia may not come naturally. It isn’t intuitive. In fact, sometimes the logical thing is the wrong thing. For example, if they have developed swallowing or chewing difficulties, insisting that they eat may not help. Learn about the disease and its treatment and consult with your loved one’s doctor or aged care specialist and ask their advice.

Here are a few considerations:

• Focus on compassion and empathy for your loved one. Don’t try to be perfect.
• Perform a reality check. Know that there are ebbs and flows and that the progression of the disease is unpredictable.
• Memory challenges may only be part of the picture. Sometimes, there are personality changes and other mental symptoms.
• Be ready to face the future. With dementia, the only constant is change.
• Find resources for coping with carer stress. The My Aged Care Service finder can be of help with this.

Carer Stress

When a loved one is in the moderate and severe stages of dementia, it is normal to feel high levels of carer stress. You may also need to cope with grief as you approach the loss of a loved one. It might be comforting to compare notes with a social worker experienced in working with carers, or a home care agency who specialises in dementia care like Home Care Assistance. The social worker can share coping strategies for dealing with the many demands of caring for a loved one.

In the meantime, you might want to think about:

• Scheduling ‘me-time’. The more demanding your caring situation is, the more important it is to look after yourself.
• Taking regular breaks. This will help you to avoid carer burnout due to the often overwhelming demands of providing in home care.
• Don’t try to do everything on your own. Seek support from family, friends, and outside in home health care resources.
• Talk with your family and children about caring.

Talking about Dementia with Children

Be honest when explaining dementia to children. Children are very intuitive. They will know that their relative is changing and that their behaviour is unusual. Explain the disease and that loving their family member is most important. Engage them and empower them to be part of their in home care. Younger children can read to your family member or help you with chores. The family will be less stressed when the situation is discussed out in the open.

You might also wish to share ideas with your kids on how to communicate with your loved one:

• Go with it. If the grandparent says something that doesn’t seem to make sense, tell children to just play along. It’s sort of like playing make believe.
• Plan ahead. Suggest what to talk about or choose an activity in advance.
• Use activities. Try a colouring book, listen to music or sing songs together.

Have regular family meetings

Sit down on a regular basis to talk about how caring is impacting the family as a whole. Talk about the impact of the condition on the family and address stress points and difficulties. Meet with a therapist, case manager or home care agency if that will help to solve grievances.

Here are a few ways to hold a successful family meeting:

• Decide who will be part of the caring team
• Create an agenda for the meeting
• Try to stick to the facts rather than expressing personal opinions
• Following the meeting, send a summary to all interested parties

Balance time with your partner and children

Caring for someone with dementia can quickly become the focus of attention for the entire household. Young children and spouses can feel excluded and left behind. Take time to schedule activities for just your family. A family member or professional in home care worker can stay with your loved one and bring special activities, so it is a fun evening for them as well.  Some ideas that might help include:

• Create a family calendar. This should include not just appointments, but fun activities centred on togetherness.
• Find a support system. Being the primary carer doesn’t mean one has to be the only carer. Create a tag team and let other family members get involved.
• Talk things through. Shine a light on the factors that may stress relationships by holding a family meeting.

Know when it’s time to bring in outside help

Sometimes, even though every fibre of your being tells you that you should be able to handle the demands of caring, it is best to bring in some help. If and when this time arrives, in home care can be a true blessing for family carers.

In home care services offer help with the many activities of daily living in the persons own home, including:

• Companionship
• Light housekeeping
• Grocery shopping and/or making meals
• Transportation
• Medication reminders

You can also consider respite care, which gives you a little time away for yourself.

You can relax, knowing that your parent/loved one, will receive the in home care services they need while you are away. Respite care services may help you return to your caring tasks with renewed energy and enthusiasm.

Pay attention to changing physical needs

When caring for people with dementia, most of the attention goes toward a loved one’s changing mental state, especially memory problems. But dementia patients also have changing physical needs that sometimes get missed or mistaken for behavioural problems from dementia.

Keep an eye out for changes in:

• The ability to dress oneself. This means carers should purchase clothes that are easy to wear and that won’t cause skin irritation.
• The ability to communicate or even speak. Remaining flexible and finding different ways to communicate can make a world of difference.
• Eating and swallowing. Pureed foods can be a blessing should this occur.

The Rewards of In-Home Care

Providing in home care for a loved one takes effort but can bring valuable benefits. It means your loved one can stay in the home and community they’ve built for themselves. It can also create a sense of comfort and stability while ageing in place. Staying at home also gives seniors a greater sense of independence. In order to reap the benefits, measures must be put in place, possibly including in home health care and home care agencies to make sure they stay safe and supported throughout their journey.

Have you found other care strategies that work for you and your family? If so, we would like to hear from you. Senior care is its own special community and by sharing information we can help one another to provide meaningful care.

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References

Care Options

Home Safety

Caring for Someone with Dementia: 5 Fundamentals

4 Things You Can do to Alleviate Carer Stress

Teaching Children How to Talk to Loved Ones with Dementia

Getting the Most Out of a Family Meeting

3 stages of Alzheimer’s