Living with Dementia

Dementia affects approximately 800,000 people in the UK.

Living with dementia is a highly challenging for those that have been diagnosed with the condition.  

However, less recognised are the demands on their carer - especially if you are living together!

Each new day brings new challenges.  

The carer has to learn to adjust to changing ability levels and the development of new behaviour patterns.

Without a strong support system carers have an increased risk of health problems too - such as anxiety, depression and lowered resistance to infections  as their own needs are forgotten.

What is Dementia?

Dementia is an umbrella term used to describe a significant decline in cognitive functioning and other mental abilities.

It is not a disease but symptoms caused by damage to the brain.

The two most common types of dementia include Alzheimer’s disease and vascular dementia.

One of the best coping strategies for a carer living with Dementia is to learn as much as you can about the condition.

The Symptoms

Dementia symptoms vary significantly from one person to another and vary in severity.

Forgetfulness 

Dates and events may be forgotten. They may ask the same questions again and again. Relying on others to help them remember things that they were once able to remember on their own.  

Planning 

Difficulty in making plans or remembering prearranged plans. Such as a doctor’s appointment or meeting family.

Problem solving

Indecision in deciding which bank card to use at the checkout or counting money.

Getting around 

Forgetting how to get to a certain place.  Or forgetting that they have visited a place before.

Concept of time and place

Losing track of the time, the date, the month and the season. Becoming confused in certain places. Dress inappropriately for a season, or, simply forget how they got to a certain place and why they are there.

Visual perception

Finding it more difficult to read or judging distances.

Communication

Difficulty in understanding words, speaking to others, and writing. Struggling to use the right word is common. The inability to follow a conversation is common. Repeating words, phrases, and sentences is also common.

Mood and personality changes

Confusion is common. Additionally, anxiety, depression, and suspicion may be experienced. When items are lost, they may actually accuse their loved ones of stealing from them.

 

Coping Strategies and Aids

If you are a carer of someone that is living with dementia, it is quite likely that you have seen some or all of the symptoms listed above.

So, what can you do to make your life easier?

There are many steps that you can take to make caring easier and to improve the life of your loved one.

Step One

Look at your home - are there things you can change to make it easier for them to get around?  It could be that simply removing furniture or getting a different type of chair can make a big difference.

Although it's hard to imagine try to think about the changes that might need to be made in the future.

If your home need alterations or additions such as a wet room or a stair lift contact your local social services.  They can arrange for an Occupational Therapist (OT) to come to your home for an assessment.

This is important as the OT can advise on the right type of products and may be able to supply what you need.

The OT assessment is also the gateway to the Disabled Facilities Grant and other charity funding.

Step Two

Those living with dementia may forget to undertake everyday tasks such as taking medication or making a cup of tea.

Memory care aids can help by providing visual-based reminders.

These range from simple pill reminders that only cost a few pounds to high tech lockable automatic pill dispensers with times pre programmed for individual and daily needs.

Simple signs on the doors and labels on cupboards can help with orientation and reduce frustration.

Step Three

Dementia patients may lose the ability to wash and properly clean themselves.

There are many different products available from local pharmacies to help make washing easier... shower stools....long handled aids to reduce bending...non slip mats....lots of options!

Specially designed adapted toilets such as a closomat or a biobidet can really increase independence and reduce the need to shower if incontinence is an issue.  These items may be funded by your local council.

Step Four

If the Dementia impacts the ability to move freely and limits the range of mobility check out different types of mobility aids.

These can range from canes, walkers, wheelchairs, and scooters.  Some products may be provided by the NHS or Social Care.

There are long waiting times for an assessment at wheelchair services across the UK so if the need is urgent you may have to purchase privately.

Getting the right mobility solutions will help retain independence and reduce restlessness.

Step Five

Dementia patients have the tendency to wander. They may become lost or confused about time and place.  For example getting up in the night and showering thinking it is morning!

As a carer, it is tiring keeping track at all times of the day and the night - especially if you are losing sleep at night.

Use products around the home to help with maintaining time orientation and keep them safe.

A talking clock or a wall clock with day/night symbols may help in the early stages of Dementia. From personal experience it is best to introduce these very soon after diagnosis as they might be too difficult to understand later.

Most local councils operate a Careline scheme where you can buy or hire a link to a call centre in case of an emergency.

The person with Dementia wears a pendant either around the neck or on the wrist like a watch. Unfortunately, it is only successful if the person with Dementia will wear the pendant and/or understands why they are wearing it.

If wandering outdoors becomes an issue look at door and window alarms, border patrol safety beams, and GPS trackers to help keep them safe in the home.  

Step Six

Keep to a routine.  Dementia patients like routine and familiar places. They find it reassuring and are more able to cope.

Going away from home can completely disorientate someone with Dementia and they can become confused with the changes.

As a carer this is demoralising as you see your opportunities for getting out reduced and possibly increased isolation.

Especially, if the person you care for is not able to be left alone anymore.

So, this leads us to....

Step Seven

Have time away from caring!

Contact your local carers group to find out about support available locally. They can give you information on the Carers Allowance and obtaining a Carers Assessment.

The Carers Assessment looks at your needs rather than the person you are caring for.  Different areas have different resources but most will be able to direct you to respite care and support groups.

Having time for yourself or respite care is important as you need time to be you.

And Finally...

There is no doubt that living with dementia is a challenge!  

First and foremost, you should learn as much as possible about the condition.

The more that you know, the more you will understand.

Each day will present you with its fair share of challenges, but, there are many coping strategies that you may use to help your loved one.

Try to ensure that you have a support system in place.

Once the dementia starts to progress, the condition has the capability to not only overwhelm the person you care for, but overwhelm you, too!

So, remember check out local support and don't be afraid to ask for help.  

The organisations below might be able to help you.....

Carers Trust

Support services for carers including benefits, Carers Allowance and how to get a break.

Carers UK

Information and advice on all aspects of carers.

Adviceline: 0808 808 7777 (Open Monday to Wednesday, 10am to 4pm)

Alzheimer's Society

Provides information and support

Helpline: 0300 222 1122

Dementia UK

Provides specialist Dementia support for families through its Admiral Nurses service.

Helpline: 0800 888 6678