Dementia - residential care

Deciding to move a person with dementia out of their own home and into residential care can be one of the most difficult decisions a carer ever makes, especially when the person has been a long-time companion.

Being prepared can make the decision less stressful#

Understanding the services, policies and costs of residential care ahead of time can help carers make the best choice, even if a decision has to be made quickly.

People and organizations you could talk to may be able to:

• offer support and answer questions about access to home and community care
• explain fees, bonds and charges, and the range of community-care programs available
• describe the services that can help a person stay in their own home for longer

Long-term residential care facilities are often grouped into those that provide higher-level care and those that provide lower-level care. Specific dementia units are also available in some places.

Lower-level care facilities#

Lower-level care facilities suit people who are mobile but need some assistance. Residents may need support with personal care, laundry, cooking, shopping or supervision of their medication. Accommodation is usually in bed-sitting rooms with private or shared bathroom facilities.

Higher-level care facilities#

Higher-level care facilities provide 24-hour nursing care, staffed by nurses and personal care assistants. They are generally most suitable for a person in the later stages of dementia, or those with other significant medical conditions.

Ageing in place#

Many facilities offer “ageing in place.” This means the person can stay in the same room even if their care needs, services and funding change over time, for example from low care to high care.

Specific dementia units#

Some units are designed specifically for people with dementia and may be classified as either higher- or lower-level care. Not all people with dementia need a specific dementia unit. These units best suit people with special care needs who may not be safely accommodated in general residential facilities.

A professional assessment can help determine the level of care a person needs, recommend appropriate types of residential care, and point to facilities that may be suitable. Any concerns the family or the person with dementia may have can be discussed during this process.

Choosing a facility#

You may need to apply to several facilities and visit a number of places. Try to work through the list in an organized way, taking notes as you go. If possible, take a friend or family member along. Trust your intuition and common sense when assessing accommodation for a person with dementia. All residents should have access to the quality of care and the services they need.

When you are looking at a residential facility, some things to consider include:

• Does it feel like a friendly, welcoming place?
• Are the buildings and individual rooms suitable, and is there somewhere to sit privately?
• Can family help the person eat or shower?
• How are day-to-day issues handled, such as food, access to the bathroom, pets, mail and religious beliefs?
• What is the attitude of managers and staff? Do they listen to carers and offer information?
• What is the staff-to-resident ratio, and what training have staff had, including dementia-specific training?
• Is the range of activities and recreation satisfactory?
• Are visiting times and family access satisfactory, and can outings or overnight stays be arranged?
• Does anyone speak the person’s language?
• Are other services, such as hairdressing or massage, provided?
• Is there help with making the move from home to the facility, and can increased needs be catered for later?
• Are carers asked for suggestions, is there a complaints policy, and can carers join a residents’ or relatives’ committee?
• Is the security satisfactory, is there freedom to move around, and has the fee structure, including any extra costs, been fully explained?

Once a place becomes available you may need to decide quickly, so it helps to plan the move in advance.

Planning the move#

People with dementia can be disturbed by change. Explain simply and gently where and why they are moving, and emphasize the positive aspects, such as new friends and enjoyable activities.

If at all possible, introduce the person to the new facility gradually, so the place becomes a little more familiar and a little less confusing. Sometimes this is not possible, especially if the move must be made quickly.

Some tips that may help with the change include:

• Make sure the person’s room has as many familiar items as possible. Family photos, familiar prints or paintings, and familiar bed coverings can make the new room feel more like their own bedroom at home.
• Label all personal items with large, easy-to-read identification. Check whether the facility provides a labeling service, as this may save time.

During this initial stage, it will take time for both the person with dementia and the carer to adjust. Expect a period of adjustment, and remember that people do settle. Many people with dementia actually do better in a structured environment, because they may feel more secure and get more stimulation.

There is no right number of times to visit, or a right amount of time to stay. Some carers will wish to visit frequently, while others will want to rest and recover from the strain of caregiving.

Staying involved after the move#

When a person with dementia moves into residential care, the role of families and carers does not usually come to an end. Some people choose to stay involved with practical tasks such as helping at mealtimes, while others become involved in the social activities of the facility. The level of involvement varies with each person.

Visiting is usually very important to both the resident and their family and carers. It is often the main way that families stay connected with the person they have cared for. The person with dementia may enjoy seeing other family members or old friends.

Encourage grandchildren to visit. If the children are young, prepare a visiting bag with treats and activities to keep them entertained. If the facility allows it, bring in a pet.

Making visits more enjoyable#

Visiting can sometimes be difficult, especially as the person’s abilities decline. Some suggestions to make visits more pleasurable include:

• Bring newspapers or magazines to look at together, or read mail together.
• Play games that have been enjoyed in the past.
• Listen to music or a story together, or watch a well-loved film.
• Look at photo albums together.
• Help decorate and tidy the room, or help with personal grooming such as washing or brushing hair.
• Help with writing to friends and relatives, or bring others to visit.

Find activities that stimulate as many of the senses as possible: sight, taste, smell and touch. A gentle kiss or holding hands can be reassuring. Massaging legs, hands and feet with scented creams or oils may be enjoyable for some people, as can the scent of perfumes and flowers. A smile, a comforting gaze or a look of affection can often provide reassurance.

For many people, music provides comfort and familiarity. Visits from friends and relatives, even if not recognized or remembered, can provide stimulation and comfort. Listening to a favorite book or poem can bring enjoyment, and a stroll around the grounds, even in a wheelchair, may be pleasant for both resident and visitor.

Leaving after a visit#

The important thing is to make each visit as rewarding as possible. Leaving can be a difficult time for both the person with dementia and their visitors. Things you can try to make parting less stressful include:

• Take an activity to do together. Once you have finished it, it is time to go.
• Ask staff to divert the resident, or time your leaving for when a meal is about to be served, so there is something else for the person to do.
• Let the person know at the start of the visit how long you can stay and why you have to leave, for example, “I can stay for an hour, then I have to go shopping.”

Keep farewells brief and leave straight away. Lingering, apologizing or staying a little longer can make future farewells harder.

When a person wants to “go home”#

A common phrase heard from people with dementia in residential care is “I want to go home.” This can be especially upsetting for families and carers. Wanting to go home may come from feelings of insecurity, depression or fear. “Home” may describe a time or place that once felt comfortable and secure, or memories of childhood, a former home, or friends who are no longer there.

Some things you can do to help include:

• Try to understand and acknowledge the feelings behind the wish to go home.
• Reassure the person that they will be safe; touching and holding can be reassuring.
• Reminisce by looking at photographs or talking about childhood and family.
• Try to redirect them with food or another activity, such as a walk.
• Don’t disagree or try to reason with them about wanting to go home.

Raising concerns and finding support#

If you have a concern about the care you or someone else is receiving, it is important to talk about it. Complaints can help care providers improve the services and quality of care they provide, and one complaint can also help other people.

Many people find enormous comfort and practical help from support groups, which bring together carers, relatives and friends of people with dementia under the guidance of a facilitator, often a healthcare professional or someone with first-hand experience of caring for a family member. Many residential facilities also run relatives’ groups, recognizing the difficulties families face once their loved one has moved.

Key points#

• Trust your intuition and common sense when assessing accommodation for a person with dementia
• The important thing is to make each visit as rewarding as possible
• Visiting is usually very important to both the resident and their family and carers
• A common phrase heard from people with dementia in residential care is “I want to go home”

Where to get help#