All relationships change over time. Whether this is the relationship between a couple, the relationships within a family or the relationship between friends and neighbours. A diagnosis of dementia can mean that some relationships change quicker because as the person’s dementia progresses their dependence on others for support can increase and maintaining relationships and friendships can become more difficult.
The relationship between a couple is unique to them but in the main people take on certain roles and responsibilities eg. one person remembers all the family birthdays, bank details and renews the insurance, the other puts out the bins each week, remembers to MOT the car and changes the fuse in a plug when it goes. Having dementia can change all of this as it can become more difficult to remember to do certain things at certain times. The person with dementia may experience feelings of loss and grief after their diagnosis due to an awareness of loss of independence, loss of memory and a loss of sense of self. With extra responsibilities their partner can experience frustration and have feelings of loss regarding:
- Their relationship and intimacy
- Companionship, support and special understanding from the person
- Communication between themselves and the person
- Shared activities and hobbies
- Freedom to work or pursue your own activities
- A particular lifestyle and/or a planned future
- Previous relationship roles
- Becoming a carer
Dementia should not prevent you maintaining your relationship. It can be useful to meet other people who are also affected by dementia. People with dementia and their carers say that peer support groups are important as they provide opportunities to speak to other people in a similar situation and provide social interaction, which often is much needed. In East Dunbartonshire we have four Dementia Cafes (De Cafes) which provides the opportunity for peer support for more information contact Ceartas on 0141 775 0433.
Sexuality in older people is still a bit of a taboo subject but many older people still enjoy intimacy and sex. As dementia progresses all needs change, existing relationships may have to adapt, new relationships may form, desires may fluctuate. What does not change is the right of every adult to be sexually alive should they wish to be so, regardless of age, ability or sexual preference. Sexuality is a basic need which people with dementia and their carers should be able to express without fear of disapproval. Sexual relationships should always be consensual and it is important to keep yourself safe, Alzheimer Scotland has produced a factsheet on all aspects of Sexuality and Dementia. There is also a section with information for people who identify as Lesbian, Gay. Bisexual or Transgender (LGBT)
All families have their own dynamic brought about through years of living and growing together. Each person within a family has their own role to play and this is normally steady over time. When a person within the family is diagnosed with dementia the family dynamic can change. If it is a parent who is diagnosed the adult child/ren may find their role changes to start to offer more support and to take care of more tasks and this may gradually increase. It is important to recognise these changes in your relationship because you may be taking on more responsibility and dealing with stressful situations. You may not consider yourself a Carer but you are and it is important to seek out the right support for your situation. Contact Carers Link for more information.
Children and Young People
Some families decide to shield children and young people from what is going on as they worry that dementia and the changes it can bring will be upsetting. Children will pick up on these changes and it is usually better to explain what is happening and help them learn about dementia. Alzheimer Scotland has produced a booklet called Understanding Dementia which is specifically aimed at young people. There is also a film available through the CBBC website called My Life: Mr Alzheimer and Me which follows the life of some young people whose grandparents have dementia.
Friend and Neighbours
Most friends and neighbours will want to keep in touch but they may not know how to approach the subject of dementia, they may not know what to say or how you have reacted to the diagnosis of dementia. They may worry about saying something inappropriate and be fearful of upsetting you. The person with dementia might avoid social situations because they worry they might offend someone by forgetting their name It is important for people with dementia to stay connected. I’ll get by with a Little Help from my Friends is a booklet produced by Alzheimer Scotland which helps friends and neighbours understand dementia.
Let’s Talk About Dementia
Bringing up the subject of dementia can be difficult but it is important to speak about dementia as it helps reduce the stigma associated with dementia and develops understanding. Alzheimer Scotland has a campaign called Dementia Friends Scotland which encourages people to understand a bit more about dementia and the small things you can do to help people with the condition. This could be helping someone find the right bus or being patient in a till queue if someone with dementia is taking longer to pay.