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Don’t neglect the family and friends of those living with dementia

Updated: Aug 1, 2019


When someone is diagnosed with dementia the impact can be across the whole of their family and friends. It is so important that church leaders realise this and ensure that the pastoral care that they are delivering doesn’t miss anyone. Caring and loving those with dementia often raises so many questions, emotions and sometimes leads to isolation.

Below are some of the most common feelings and emotions that you will need to be aware of when you are ministering to someone whose loved one is living with dementia. These can be displayed at various times and you will need to help fully support someone as they are on this journey. The main thing to do is to reassure that whatever emotion or feeling they are going through is quite normal.


Grief and loss

We have already covered this in more detail in other blog posts however, it is good to cover this briefly again. When someone who is close develops dementia the feelings of loss are not uncommon. The loss of the person we used to know, the loss of a relationship, the loss of the future planned and grief is a common response to this loss.

Grief is individual, and everyone will grieve differently at different times and it’s not always going to become easier with the passing of time as dementia is a long journey.

As you minister take time to reflect on these losses and the emotions that are being felt at that time. Offer sympathy and empathy. Often the most important thing to those who are grieving is just your time and being there. Listen and support them and remember that grieving is not a short process and, with dementia, as the person is often still alive when the grieving process begins, hard.

Guilt

Often feelings guilt are experienced. Guilt for:

· not wanting the responsibility of caring for a person with dementia but feeling it’s been forced upon them,

· being embarrassed by odd behaviours the person with dementia may display,

· past treatment,

· lost tempers,

· feeling that you could have kept them at home longer before they had to go into hospital or residential care (even though everything you felt could be done was been done

· past promises such as “I’ll always look after you,” when this cannot be met.

Ministering to guilt can be difficult as to the person these feelings are real. The most important thing is to reassure them that they have done the right thing and how they feel is normal. Listen to them, forgive them and support them. We should never condemn someone for what they have been through and the decisions they have made. We can only love, help and pray for them.

Anger

It is natural for family members to feel frustrated and angry, especially at being what some see as ‘forced’ into having to become the primary caregiver. This anger is often exaggerated with feelings that others don’t seem to be helping out (even angry at the church for not being there as much as they would have hoped). The anger can be directed towards the person living with dementia because of difficult behaviours or the need for so much support or the taking away of their own identity and life. Or even anger at the support services or lack of help they seem to be getting.

Be aware that these feelings of anger sometimes result in behaviours that the person will feel extremely guilty for. They may feel:-

· Exhaustion

· Frustration

· Even to the point where they feel like pushing, shaking, or even hitting the person with dementia.

It is really important that you look out for any safeguarding issues and deal with them appropriately in accordance with your churches policies. If they are feeling on the edge or they worry that they could lose control, it is important to encourage them to seek further professional help from someone like their doctor, social services or even the Alzheimer Society.

See if there are any practical ways the church could take the pressure off, especially if they are feeling isolated and stuck at home caring.


Don’t forget the children and those who are younger

There is often so much focus on the person who is unwell that other family members are forgotten, or the illness is never explained to them properly in a way that they can understand.

This results in children often experiencing a wide range of emotions. Younger children may be fearful that they could get the disease or that they did something wrong that caused it. Teenagers may be resentful if they are asked to take on some responsibilities or feel embarrassed that their parent or grandparent is “different.”. University bound children may be reluctant to leave home over feelings of guilt or wanting to be there.

It’s really important to reassure young children that it was nothing they did that caused their loved one to develop dementia and that they cannot catch it. Be honest about personality and behaviour changes. Reassure them that it’s not their loved ones fault and that it’s not intentional but the disease, especially if they say something embarrassing or they forget them.

Try to find if they have any emotional needs that are not being met and find ways that the church or young people’s team leaders can support them. Problems may display themselves in behavioural changes or even withdrawal from church groups. You may need to give extra support to them at this time or it may be that you need to help their parents find a counsellor to support them who specialises in in this area.


Ask how the church can help

Don’t just assume that the family will just want lots of meals cooked or someone visiting regularly. Sit down with them and see how they are coping and ask how the church can help. As can be seen from this article dementia is a long journey so you need to do this regularly to ensure that the family know that they are being supported and loved by the church. If it comes to a point where they can’t make it on a Sunday don’t stop visiting. This is important for both the family and the person living with dementia. If they say no there’s nothing you can do check that they are not just trying to be polite and not be a burden. Let them know that you’re there for them as a church, even give them ideas and suggestions of how you can help. Most people are doing the best they can under the circumstances and even if you think I wouldn’t do it that way don’t condemn them. Offer to help them.

Just you recognising that they’re dealing with a stressful situation can be a real help to them giving them permission to ask for help.

Caregiving isn’t easy, and it’s important to make sure that the church supports those going through this ensuring that family members don’t use all their energy on caring and slide into depression and despair.

© 2019 The Prama Foundation 

Charity Number 1174197

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