Adapting to respite care

Introducing any type of extra care can be a big support for you and the person you care for. However, it can be difficult to adjust to. It is very common to be nervous about potential changes. But these feelings shouldn’t stop you from using respite if you feel it would help. 

Introducing new people 

When we know someone well, we have insight into how best to communicate with them. We often have a good idea about what makes them feel confused or settled, upset or happy, anxious or content. This familiarity, along with mutual trust, is usually built over time. 

To build familiarity between the person with dementia and anyone new, it can help to share information. It is often easier to develop rapport if we have common interests with others. So if staff know a little about those of the person, this can be a good conversation opener.

Knowing other details about the person can help to build a relationship. These include:

• their preferred names or nicknames
• topics of conversation they enjoy, or try to avoid
• their hobbies or interests
• their religious faith or other beliefs
• previous jobs or volunteering, or areas they have lived
• people who are important to them
• experiences that have shaped them.

Disrupting the person’s routine

Routine is important to most people with dementia. It can help them to feel comforted and calm, reducing stress and anxiety. It is possible that changing a routine could impact that. 

If they are being supported at home, consider arranging it on a day when they have no other commitments. If you have the choice, arrange it at a time of day that suits them best. 

For example, if they have a regular morning routine, it may be more successful introducing something in the afternoon. The distress of interrupting their routine could cause problems with the respite arrangement.

Unfamiliar environments

As well as sticking to a routine, it can be helpful for someone with dementia to stay in a familiar environment. However, this may not always be possible for respite. This may be because the carer needs some time at home alone. 

Or the local authority budget may be enough for a short break in a care home but not live-in care. 

It may also be more beneficial for the person to have respite outside the home. New experiences could provide cognitive stimulation. And also help them to feel less isolated or withdrawn.

To reduce confusion in a new environment, consider small changes. This can make it feel more familiar. 

If they are having a short break in a care home, see if they can take some of their own items they may find comforting. 

Photos in frames and personal objects can also become conversation starters. There may be some things they can change with the room layout to reflect what they are used to. For example, having the bedside table on the left or right, the curtains left open or closed, and the lamp on a certain setting.

Managing expectations

There can be many benefits to good quality respite care but it is important to manage expectations of what the break will do for you both. It is also important to determine in advance how involved you will be during the period of the respite break. For example, how often you will visit the care home (if you choose this) or how many times you will ring or be on hand for a telephone call.
 

Is respite care worth it?

Caring for a person with dementia is complex and challenging. There are positive and negative aspects, and everybody will cope with their situation in different ways. Some people feel they lose their identity when they become a carer, often feeling guilty if they do take time for themselves. It can help to remind yourself why people find respite helpful and the benefits it can bring. 

When it works well, respite can:

• improve family relationships
• reduce loneliness 
• help maintain a sense of identity for both the person with dementia and the carer
• help with anxiety and depression
• support those providing care to meet other commitments and maintain relationships
• provide longer term benefits to carer health
• mean that you can carry on caring for longer, if you choose to.

Respite care is an adjustment for everyone. If something doesn’t work or doesn’t go to plan, try not to give up. There may be other options you can try to find out what works best for you both.

Talking to other carers about your feelings can help. They may be able to give you tips and suggestions, and it can be reassuring to speak to other people in a similar situation. 

The Dementia Support Forum is our online community for people with dementia, their carers, family members and friends. You can ask questions, share experiences and get information and practical tips on living with dementia.