At this time of COVID-19 and home isolation, care staff are probably finding family carers more stressed than usual.

Increased levels of support are needed for them to provide care for the Person Living with Dementia (PLWD) at home.

This is especially true for family carers, who – due to social and physical distancing measures – may no longer be able to rely on respite services and/or visits from other family members who attended previously.

a young woman plays cards with senior, text says "Supporting people with dementia during isolation."

Caring for someone with dementia at any time has its challenges, but during this period it is likely to be more difficult than usual, putting extra strain on family carers.

The impact of home isolation should not be underestimated. Disrupted routines, reduced access to activities, and an increased sense of social isolation as time goes on can be extremely challenging for the PLWD. This can lead to the person exhibiting changed behaviours such as increased agitation, anxiety, and confusion.

Supporting everyone in adapting to these new circumstances is the key to surviving and maintaining wellbeing for both the person and their carer. Care organisations and support workers can help family carers manage the day to day of isolation by providing resources and information aimed at specific tasks and strategies. Some of these are detailed below.

Manage the home environment

With potentially more people spending extended periods of time at home together, it is important to support family carers to put strategies in place to ensure their home environments remain dementia-friendly as well as safe.

For example, carers in some situations may need to manage increased activity, noise and clutter in a household with children at home from school. They need to be aware of the impact on the PLWD of frequent negative news reports on a TV or radio. Or of overhearing family arguments as tensions rise from being in enclosed spaces together for too long.

It will be important for the whole family and/or household to understand the importance of maintaining dementia-friendly practices in the home, even in the midst of this situation. For example, designating quiet spaces where the person is not exposed to excess stimulation and disturbance and minimising the amount of ‘news’ the person is exposed to about COVID-19 to avoid raising anxiety levels.

Establishing new routines and maintaining old ones

Home isolation is bound to disrupt many routines, both for the PLWD and the family carer, which can increase stress for everyone. Regular outings such as shopping and accessing respite and social supports may no longer be available or safe.

Routines are important for PLWD as dementia impairs a person’s ability to plan, initiate and complete an activity. Consistent routines can be calming and reassuring as they help the person know what to expect. Routine activities should be assessed for risk and where routines can be continued with a little additional planning and at minimal risk to the PLWD and their carer, these should be encouraged.

For example, if the person regularly walks with their carer to the local corner shop to collect their newspaper at a quiet time of the day this may be able to continue, with care taken to ensure that they maintain social distancing from other people.

If activities have been assessed as being high risk in the current climate, new routines may need to be introduced. Developing a schedule with the PLWD around new routines can help both the person and their carer.

For example, scheduling actions that help to maintain sleep routines will minimise the likelihood of a person becoming disorientated, confused and agitated due to sleep disturbances. Plan a specific time to get up in the morning and go to sleep at night, periods of sunshine and exercise during the day.

Schedule activities that help give rhythm to the day and week. These also provide things for the PLWD to look forward to, for example, going for a walk, spending time in the garden, meals, calling a friend or family member, listening to music, reading, or watching their favourite television show.

Perhaps one new activity or routine that may need to be introduced or reinforced by the family carer is increased adherence to hand washing practices. Where required, training may need to be provided to the carer in how to appropriately wash another person’s hands.

Some of these points may seem obvious but including them in the schedule can provide the PLWD with prompts for independent action, which also reduces the need for carers to remind them as frequently. It may take a while for the household to establish new routines, but they will be invaluable for creating wellbeing and may well become the new normal going forward.

Provide activities for enjoyment, relaxation and stimulation

With so many days together, carers may need support to identify and access suitable activities and resources. While the internet provides endless ideas, it is good for carers to take a few things into consideration. These may include:

  • The person’s interests and abilities, energy levels, activities they enjoyed doing when they were younger, etc.
  • The activities the carer enjoys doing with the person and activities that the PLWD is able to do on their own or with some support.
  • The family dynamics and who else in the household may be able to provide support.
  • The activities of daily living that assist the PLWD to feel useful and part of the household, even where the action may need to be re-done later by someone else.
  • What resources are needed to undertake an activity.

Activities don’t need to be fancy or over-thought; when working as a social support carer, one of my clients had been her family’s primary homemaker. With this knowledge, I experimented with a variety of activities to find which ones felt familiar to her and matched her abilities. We spent endless hours shelling peas, making biscuits, washing up – simple tasks which brought her much pleasure and a sense of contributing.

Be inventive and look for what others are doing. Click here for some ideas to get you started.

Plus, click here for more ideas from Alzheimers New Zealand.

As an aged care organisation or support worker, you may be able to source and provide some resources for the family carer, such as:

  • Dementia friendly activity packs that could include word games, colouring in sheets, pencils, craft ideas, magazines, etc.
  • Look out for new apps the carer and the PLWD might enjoy or find useful.
  • Include any tips and ideas for the carer that you find in a regular newsletter or circulation.

And don’t forget to check in with carers on a regular basis to provide targeted and timely support during this time.

Facilitate ways for PLWD to connect with significant others

During this time where we all need to socially distance ourselves to support the physical safety of vulnerable community members, we are at risk of negatively impacting a PLWD’s emotional safety. Our quality of life is dependent on interaction and relationships with others, as well as feeling a part of a community. This may not be possible for some time.

If a person with dementia stops engaging with others this could lead to them becoming withdrawn and they may find it difficult to re-engage in the future. Some of the impacts of reduced social support for both the PLWD and their carer can include feeling increasing levels of loneliness, fatigue, anxiety or stress.

While people are required to be physically distancing themselves, there is still a lot that we can do to minimise that chance of social distancing becoming social isolation. Maintaining social contact is vital to keep relationships alive and to ensure that people with dementia continue to be connected with those who matter most to them.

Normal scheduled routine visits can continue, albeit with a change to using video conferencing and social connection applications. Organisations and support workers can assist family carers to set up and make use of technology to communicate with other relatives and friends by using smart phones and tablets and accessing apps such as Skype, WhatsApp, FaceTime, and Zoom.

Other ideas for maintaining contact with loved ones could include asking family and friends to send or leave letters, art works and cards in the letterbox, and encouraging the PLWD to create similar items to send out to family and friends. The carer or support worker could also spend time with the PLWD looking through an album of photos of family and friends and talking about each person, reconnecting with old friends and faces.

Support carer self-care

Those family members looking after and supporting a person with dementia need to also look to their own physical and emotional needs, as the demands of caring and the time and the energy required from the carer can become overwhelming and draws on their deepest reservoir of patience.

It’s more important to check in with carers, especially at this time, to remind them that self-care strategies are important and encourage them to carve out time for themselves. Some strategies may include:

  • If respite is still a safe option, take it
  • Schedule regular rest times
  • Spend time at the end of the day winding down with the PLWD doing activities such as simply watching TV together – not the news!
  • Read a book or magazine
  • Put on an audio book or listen to some soothing music
  • Spend time gardening, or simply sitting out in the garden
  • Go for a walk alone or with the PLWD
  • Pick up a pen and start writing, fact or fiction it doesn’t matter

It’s as important to help the family carer at this time to feel supported and to minimise as much as possible the impact this new social isolation world we are living in on their caring role.

If you can think of someone else who might benefit from this article, send them a link. We’d appreciate it! And if you’re looking for more helpful resources, why not check out our Total Quality Package resource hub? We have culturally appropriate, tailored resources that are designed to make your job simpler and help you provide quality care to your clients. Click here to find out more.

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