Maintaining quality of life and wellbeing through care at home

Caring for someone close to you who has dementia can be challenging, both physically and mentally. To help families who are facing these issues, we asked Rikki Lorenti, an Admiral Nurse, to share his expert advice.

Here, Rikki suggests some proactive steps that can be taken to help improve quality of life, for both the carer and the person they are caring for.

“Supporting someone with a diagnosis of dementia is not easy,” says Rikki. “As the condition progresses, the level and type of support needed is also likely to increase.

“As well as day-to-day care needs, it can be a rollercoaster for families where they find themselves dealing with a range of emotions along the way. The result of this is that maintaining quality of life for both parties can sometimes feel like an impossible task.”

He continued: “When we talk about ‘quality of life’ what we first need to understand is that it is a subjective topic and will mean different things to different people. But what we do know is that it is very important that the needs of both parties are met equally. Finding a balance really is key, as the wellbeing of the carer is just as important as that of the person with dementia. Any imbalance will only add to the challenges faced.”

“My main piece of advice is to be as prepared as you can be,” added Rikki. “Put plans in place that can help you manage any challenges that may arise, as well as encouraging positive wellbeing.

“The first step is to talk through the issues, what may happen in the future and the ways you may manage them. It will always be better, and help reduce anxiety all round, if you can plan ahead rather than waiting till something happens and then having to react.”

Rikki’s advice for maintaining wellbeing

Managing stress & mental health

As a carer, you need to be aware of how stress can impact on your own mental and physical health. This is one of the areas where it is important to try and find balance, as you may deteriorate yourself if you’re placed under too much stress. Take a second to reflect on how you may better deal with stress. For example, consider using techniques that help promote relaxation and mindfulness.

If the person you are caring for is still capable, then take a step back and allow the person to continue to remain as independent as possible. Some level of risk is ok (see next point on positive risk-taking). Your overall aim should be to find a balance and understand how one thing can impact on the other.

Introduce positive risk-taking

It can be easy to feel you need to wrap the person you’re caring for in cotton wool. One common worry I hear is ‘I can’t let them go for a walk alone in case something happens’. But fears like this can sometimes increase stress, agitation and possible confrontation.

It is important to enable and support the person with dementia to keep active and as independent as possible. Sit down and talk to them about what they would like to do. Think about and assess any risk, and try to minimise it. Instead of saying they can’t do something, see if there is a way to make it happen. Assess any potential risk and agree extra steps that may need to be taken to minimise that risk. This allows them to stay in control.

For example, if they want to go out for a walk alone then talk about ways to make that happen. Agree a time they will return and consider using a tracker. Agree that a tracker is only to be used as a safety net in the case of an emergency, such as in the event that they don’t return at the agreed time.

Prepare a contingency plan

What would happen if there was an emergency? What information and items would you need? This step is about having a contingency plan in place – knowing what you would do, who you would call and having the answer to any medical questions at your fingertips.

1)    Network contact details – The first thing to think about is a support network contact list. Who will you call in an emergency? List their landline, mobile and email. Put the list together in order of priority, with the most likely to respond and answer the call at the top.

2)    Medical numbers – Also pull together all other emergency contact details you may need, such as GP and Crisis Team numbers, including out of hours numbers.

3)    Current medication list – Put together a list of current medications and dosages.

4)    Night bag – Have a hospital night bag packed and prepared. Include things like slippers, nightwear, treats, books etc. Then leave it in a corner ready and waiting for if it’s ever needed.

5)    Personal preferences – Record a list of the person’s likes, dislikes, preferences, and any other wishes. Use this space to add in any religious or dietary considerations also.

Introduce activities that promote stimulation and positive interaction

The aim of this step is to encourage positive interaction that can help reduce anxiety and distress, while aiding cognitive stimulation. One way is to do this is to start planning days out that may link to past memories. Or you may use pictures of food and then discuss smells and memories of food that might inspire a conversation. Music can also be very powerful. Play a piece of music that will lead to a memory and that the person can sing or dance to.

Taking part in CST (cognitive stimulation therapy) is another great way to encourage positive interaction. This technique uses the past as a way to stimulate conversation. For example, you may look at a picture and rather than asking ‘who is that person’, you may ask what era are they from, what was that era like, what clothes did they wear…etc. Taking away from the original anxiety. All of these interventions support a reduction of anxiety, while also expanding interests.

For more information about our dementia care services, please call the team on 020 7644 9554.