Caring for Dad, from near and afar – Simon’s story
Simon, who has lived in New Zealand for two decades, discusses how he cares for his dad who has Alzheimer’s disease and lives alone in the UK.
When someone is diagnosed with dementia, it can change the way they think about themselves, as well as the way other people behave towards them.
Friends and family may be concerned that the person is vulnerable, and become over-protective.
They might encourage the person with dementia to stop driving or working, or to give up their usual hobbies and activities – for example, if they are worried about them leaving the house.
The changes in the person’s abilities can also affect the roles of their family members.
The person’s spouse might feel that they are now their caregiver rather than their partner. Or a child who cares for a parent with dementia may feel their roles have reversed.
This can lead to arguments and resentment – the person with dementia may not feel that they need to be looked after, nor agree with the decisions that relatives make on their behalf.
And their family member or friend may be frustrated if the person with dementia won’t accept help, and worried if they think they’re putting themselves at risk.
Some forms of dementia – particularly frontotemporal dementia – can also cause changes in the person’s personality and social behaviour, which can heighten tension and misunderstandings.
Staying connected to a person with dementia
While the dynamic between you and the person with dementia might change, you can still enjoy a close and meaningful relationship with these practical steps:
- speak honestly about your thoughts and feelings so you can understand each other’s perspectives
- consider what you miss from your previous relationship. If the person with dementia was your confidante, could you turn to another family member or friend? If you took part in a particular activity together that is no longer possible, could you introduce a modified version – or continue a similar activity by yourself?
- try to find new ways to connect with each other – for example through gardening, doing craft, playing board games or watching films you both love
- focus on what the person can still do, rather than on what they can’t, to help them maintain some independence
- share news of the diagnosis with family and friends, including how it has changed your role and relationship with the person – this can lead to more understanding and support
- give friends and family advice on how to support the person so they too can continue to enjoy a good relationship with them
Accepting the changes to your role as a carer
Although the caring role can be challenging, it can still give you enjoyment and fulfilment, and ways to connect with the person with dementia.
- Say yes when family and friends offer to help – and tell them what would be most useful
- Develop strategies to address issues that tend to cause tension. For example, if the person forgets when visitors are coming, set a reminder on their phone so they don’t rely on you to tell them. Or if they want to wear the same clothes every day, buy another set exactly the same so you can wash one while the person wears the other
- Consider raising awareness about dementia with family and friends or in your local community – this will help reduce stigma, give people a better understanding of the condition, and give you a sense of purpose
- Join support groups – for yourself and/or the person with dementia. It can help to share experiences and advice with people in a similar situation
- Stay involved with your existing social networks and hobbies to maintain a life outside caring
Planning for the future for a person with dementia
Discussing future plans, care requirements, finances and expectations can help avoid conflicts down the line.
It is very important, if possible, to draw up a lasting power of attorney (LPA) while the person with dementia has mental capacity.
This nominates someone to make decisions about health and welfare and/or property and financial affairs if the person can no longer do so themselves.
You could also:
- Draw up an Advance Care Planning together – this records the person’s preferences for their future treatment and care, so you understand their wishes and can respect them, as far as possible
- Ensure the person makes a Will, or updates their existing Will, to minimise disagreements about their wishes after they have passed away
- Have a family discussion about any plans you had prior to the person’s diagnosis, eg going on holiday or moving house. Try to find ways to accommodate these plans, or adapt them so they are achievable
- If you or the person with dementia work, speak to colleagues and your employer about the diagnosis so they can put support in place to help you keep working for as long as you want
Sources of support about changing relationships and roles
To speak to a dementia specialist Admiral Nurse about changing relationships and roles or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email helpline@dementiauk.org or you can pre-book a phone or video appointment with an Admiral Nurse.
- Lasting power of attorney
- Advance Care Planning
- Employment
- The emotional impact of the diagnosis
- Dealing with stigma
- After a diagnosis of dementia: next steps checklist
- Making the home safe and comfortable for a person with dementia
- Tips for better communication
- Dementia and driving
- Caring from a distance
- Looking after yourself as a carer
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
