Living with alcohol related brain damage in Scotland – new report

A new report from the Mental Welfare Commission finds people with alcohol related brain damage living in care homes where they are much younger than other residents; compelled to live in a setting they would never choose.

The report - Care and treatment for people with alcohol related brain damage in Scotland - found that for people aged under 65 who have alcohol related brain damage (ARBD), living in inappropriate community care homes with much older residents can create dependency and isolation. 

Discriminatory perceptions of a ‘self-inflicted illness’ can also lead to people with a diagnosis of ARBD being marginalised and socially isolated. 

The Commission has raised concerns about care and treatment for this small but vulnerable group of people in the past, and published guidance for health and care services to help share good practice. 

Today’s new report focuses on people with a diagnosis of ARBD who are also subject to a welfare guardianship order. If someone is unable to make key decisions or safeguard their own welfare, a court can appoint a welfare guardian to do that for them. The welfare guardian can be a relative/friend/carer or it can be a local authority.

The report looks at care arrangements, at how the law is being used and at whether good practice is being followed. 

Earlier this year the Commission spoke to 50 of the 553 people in Scotland who had an ARBD diagnosis and a guardianship in place.

Just over half were aged under 65, and half were 65 to 75.

Just over half had a local authority guardian and just under half had a private guardian, meaning a relative or friend.

The Commission also contacted services and spoke to families.

Julie Paterson, chief executive, Mental Welfare Commission, said:

“There were many positive examples of good care, which we highlight in this report, but also areas of concern.
“We found many of the people we met were living in care homes where they were much younger than the other residents. Those commissioning services must consider whether they are breaching the person’s human rights if the person finds themselves compelled to live in a setting which they would never choose. 
“We make recommendations about areas of care and treatment we believe could and should work better, and we will follow those up. 
“I hope our report will be widely shared and discussed, and others will join us in seeking improvements for this vulnerable group.”

Many of the relatives/carers were positive about the care and support that their relative was now receiving, although some said that caring for someone with ARBD had had devastating and long-lasting effects on the whole family.

Recommendations

The report has four recommendations for health and social care partnerships. The first asks that they commission suitable, age appropriate, and where possible, specialist alcohol related brain damage services.

It recommends that the critical role of delegated officer in a local authority must be held by a named person who maintained regular contact with the individual subject to the restrictions of the guardianship order. The report found this was not always the case, which was not in line with the spirit of the legislation.

The third recommendation focuses on multidisciplinary reviews for people with ARBD, saying they should be dynamic, coordinated processes informed by the principles of the law, maximising both the contribution of the person and their relatives/carers where appropriate. 

The final recommendation relates to advocacy support, an important safeguard to ensure respect for the rights, will and preferences of the person and not what is considered by others to be in that person’s best interests. 

Julie Paterson added:

“Working on this report, we also took the opportunity to talk about the useful and practical information we have gathered in our ARBD good practice guide, and we shared this with care home staff. We explained the role of the welfare guardian, how this differed to the role of the next of kin and how important engagement and participation is. 
“We will continue to promote our good practice guide because it can make a huge difference to the lives of people with ARBD, and can be a positive support for those caring for them.”

Notes to editors

1. Alcohol related brain damage (ARBD) refers to the effects of changes to the structure and function of the brain resulting from long term consumption of alcohol. If a person with ARBD stops drinking alcohol and receives good support, they may be able to make a partial or even full recovery. They may regain much of their memory and thinking skills, and their ability to do things independently. 
2. Seventy percent of the 50 people contacted were living in care homes. Twelve per cent were living in the family home and 18% were living in other settings e.g. hostel or supported accommodation. Fifty-two percent of our sample - 26 people - were aged under 65 years, the youngest in their 30s. Seventeen of the 26 people were reported as living in a care home. Only one of these care homes was registered as a specialist service in relation to ‘brain damage including alcohol related brain damage’.